For many patients, time spent in an intensive care unit is a deeply disturbing experience, and not just because they are suffering from a serious illness. They are often heavily sedated, encircled by beeping equipment, unable to talk or even think clearly. Doctors and nurses prod their bodies as scores of trainees watch.
"I could feel people touching me but I couldn't move,'' said Ashleigh Robert, 30, who spent three weeks in the ICU at Beth Israel Deaconess Medical Center in Boston awaiting a liver transplant. "It was extremely frightening."
Medical advances such as heart pumps and ventilators have led to more ICU survivors. About 80 percent of the 5 million patients who end up in intensive care each year return home. But there is a growing realization that many are left emotionally troubled by the experience, which can be marred by hallucinations, poor communication, lack of respect for privacy, and, later, post-traumatic stress syndrome.
Now, a group of leading hospitals, including Beth Israel Deaconess, is working to make the ICU less terrifying and more humane, using innovative tools such as iPad applications that feature patient biographies and journals kept by nurses.
Deeply-sedating drugs can cut pain and allow healing, but they also contribute to patients' confusion and delirium. That sedation also can make staff feel less of a human connection to ICU patients.
To help address this, Beth Israel Deaconess developed a bedside iPad program designed to increase "respect and dignity'' in the ICU, a program for which Robert and other ICU patients provided advice. Families are encouraged to download biographies of patients and photos — they can do so in the patient's room or at home — for staff to view. In turn, caregivers must constantly update their own names, photos, and roles for families and patients to refer to on the bedside iPad. Even basic protocol is being emphasized. Staff are required to introduce themselves and explain their purpose.
Paul Daigneault, 50, who was a patient in a Beth Israel Deaconess ICU five years ago, praised his medical care but said that nurses or residents would occasionally slide a needle into his arm in the middle of the night without warning or even introducing themselves. It was startling and upsetting.
"Many providers walk into a room, pull the sheet down, and start examining the patient's belly,'' said Dr. Daniel Talmor, the hospital's chief of anesthesia, critical care, and pain medicine. "It's not only disrespectful but could lead to actual hallucinations and a perception of harm.''
Starting in 2012, the California-based Gordon and Betty Moore Foundation gave $30 million to improve ICU care at The Johns Hopkins Hospital in Baltimore, Beth Israel Deaconess, the University of California San Francisco Medical Center, and Brigham and Women's Hospital in Boston.
They are all testing tablet applications to reduce physical harm to patients such as infections and pneumonia, but also "social'' harm, including inappropriate or excessive care that doesn't match a patient's goals, and loss of respect and dignity.
Hopkins, which received the largest portion of the grant, is trying to measure when disrespectful care occurs. It programmed a survey to pop up every three days asking patients — or, if the patient is unconscious, family members — if they are being treated respectfully. The hospital also tracks whether caregivers read the patient biographies.
Beth Israel Deaconess investigates all reports of disrespectful care, in much the same way it investigates medical errors and other problems, classifying the seriousness of a particular incident and searching for solutions.
Many hospitals are trying to cut back on sedation of ICU patients, but Massachusetts General Hospital in Boston is also testing another approach to reduce confusion and PTSD. Nurses on the 18-bed Medical Intensive Care Unit began keeping handwritten bedside diaries for unconscious patients three years ago.
In research published last year, Johns Hopkins found that nearly one-quarter of ICU patients suffer from PTSD — a rate similar to combat soldiers and rape victims — and that journals can fill in memory gaps or replace frightening ones.
Makiko Damon, a 37-year-old mother of two, went to the emergency department at her local hospital in Vermont last November with a fever, cough, and difficulty breathing. Doctors diagnosed severe pneumonia, which quickly spiraled into a serious lung disease. Her lungs were so badly damaged that Mass. General doctors connected her to two machines to give her body oxygen, and she was heavily sedated for nearly two months.
In a blue notebook, nurse Sarah Diamond explained why 10 tubes were inserted into her patient's neck, arms, nose, and chest. She described how nurses turned Damon every two hours to prevent sores and changed the sheets every night to stave off infection. She wrote about Damon's large following of family and friends. "They have been making sure that someone is here or very nearby, even when you were sleeping," Diamond wrote.
She believed the diary would help Damon "piece together the puzzle.''
When Damon gradually came to three weeks ago, she could not distinguish between her vivid dreams and reality. She was convinced she had married her boyfriend. He told her this wasn't true, and when she read the diary, in which family also wrote entries, she knew she could not have attended a wedding.
"I really couldn't tell that was a dream,'' Damon, who could not speak because of the ventilator, scribbled on a piece of paper. "This helped me know what really happened.''
Beth Israel Deaconess has set up a diary on its iPads where families can write, to help reassure patients that "the providers weren't monsters attacking them but doctors putting in a central line,'' Talmor said.
Hospitals have monitored medical harms, such as infections, for years. Figuring out how to measure respectful care is more challenging.
First, hospitals need to define it. Johns Hopkins doctors interviewed 21 ICU patients who identified specific behaviors that demonstrate respect, including providing honest information, and paying attention to patients' appearance and modesty.
"We are really busy,'' said Cindy Dwyer, a nurse and project coordinator at the hospital, which is testing the iPad program on a 12-bed surgical ICU. "Sometimes the priority is keeping them alive. The other stuff are very nice extras. We are not trying to make those just extras but a regular part of taking care of patients.''
While Daigneault was in the ICU at Beth Israel Deaconess in 2011, his dreams and hallucinations were vivid. Some were funny. He was convinced the ICU turned into a brothel at night. Others were scary. Friends tried to hold him under water. Daigneault's cancer is now in remission and he credits hospital staff with saving his life.
He wanted to repay that effort and, like Robert, joined a patient and family advisory committee. They both stressed the importance of caregivers knowing patients' personal background, including work, hobbies, and family, and of introducing themselves to patients and families.
"Whether you are the person coming in to sweep the floor or bring the food or take blood at 2 a.m., the more you can narrate what you are doing to the patient, the safer the patient feels,'' Daigneault said.