Pink and white roses brightened the intensive care unit’s sterile decor, and nearly three dozen friends and relatives filled the room with noise and heat and movement. It was more life than this grim room at St. Joseph’s Hospital in Ontario had seen in days.
The bride lay on the bed, eyes closed, a dress that had been cut open in back draped across her motionless form. The life support machinery that kept her alive hummed steadily.
A chaplain conducted the traditional marriage ceremony rituals, and the groom, Rocco Santucci, said “I do.” Then it was the bride’s turn.
But Marija Durlov, 27, was unconscious and just barely clinging to life after suffering a seizure the week before, so her family said the words for her, according to the Hamilton Spectator.
The jangly opening chords of Pearl Jam’s “Future Days” filled the room, temporarily drowning out the usual hospital chorus of beeps and hums and whirring equipment. It would have been their wedding song, had their marriage not been delayed by the birth of their son and then derailed by Durlov’s unexpected seizure. The young bride, a vivacious salon owner with apple cheeks and an independent streak, would die the following day.
“If I ever were to lose you,” Eddie Vedder crooned over the stereo. “I’d surely lose myself.”
The woman responsible for this strange and solemn ceremony last spring was Deborah Cook, a professor at McMaster University and physician in the St. Joseph’s ICU. The wedding was a wish granted to Durlov, Santucci and their families as part of Cook’s research on ways to humanize the normally austere setting where most people end their lives.
She calls it “The Three Wishes Project.”
Despite the name, Cook is no genie, and the wish that seems most obvious — “make her better” — was one she could never grant. All 40 of the patients selected for the project were no longer responding to treatment, or their families had opted to take them off life support.
Instead, the wishes were smaller, more prosaic, within the range of a small hospital unit and its staff. One patient wished for a rock-and-roll singalong with their friends. Another wanted bagpipes to be played at the moment of death. One mother wished to lie in bed with her son before he was declared brain dead. She curled her body around his, just as she had on the day of his birth.
The results of Cook’s research, published in the Aug. 18 issue of the Annals of Internal Medicine, suggest the possibility of a different kind of ICU experience, one that includes laughter and solace and the resolution of unfinished business as well as heartache.
“The ICU is a very vulnerable time for patients and their families,” Cook told The Washington Post. “It can be trying and traumatic … and it can be easy to lose hope.”
“A wish,” she continued, thoughtfully, “a wish, in a sense, is hope.”
The procedure for Cook’s study seems somewhat intuitive, though she said it’s the first of its kind that she knows of. When it seemed 95 percent likely that someone would die, St. Joseph’s doctors would start learning more about about the patient’s life and ways to make their last days more meaningful. Often these conversations had to be conducted with patients’ families, since the patients themselves were usually unable to speak. From those discussions, a list of at least three wishes was drawn up. Then the staff set about trying to grant them.
It usually wasn’t difficult. The 159 wishes recorded in Cook’s “wish bank” are a testament to the notion that death makes us humble. They fall into five broad categories — humanizing the environment (for example, playing the patient’s favorite television channel 24 hours a day), personal tributes (a bedside tea party), family reconnections (locating an estranged relative), rituals and religious observance (Santucci and Durlov’s wedding ceremony) and paying it forward (organ donation) — and, for the most part, cost less than $200.
There’s little attention seeking or bravado to the wishes — no requests for visits from celebrities, no demands for world change. Just a desire that the bodies in the beds be recognized as people.
“So my mom’s lying there, cognitively dead. Her heart’s still beating, she’s on life support … you have no idea who she really was,” the daughter of one patient recalled to Cook’s team during an interview at the project’s end. “And this—it was just wonderful. It struck a chord because it allowed me to … talk about her, and, you know, give the staff …a vision of who she was.”
That’s one important aspect of the Three Wishes Project, Cook explained: It gives families a sense of control in a setting where so much is out of their hands.
“The wishes do reflect the realization of hope at the end of life,” she said. “They are tangible, they are implementable, they are meaningful.”
It’s impossible to know what patients themselves think about the wishes. By nature of the project, there is no way of interviewing them at its end. But statistics suggest that the kinds of human touches encouraged by the project are probably appreciated by the patients at its center. The vast majority of Americans and Canadians say they want to die at home, but most people in both countries spend their final days in a hospital.
Granting wishes helps physicians too, Cook said. The environment of the ICU is intense, efficiency-driven and impersonal. Doctors often spend more time scanning charts and referencing computers than conferring with patients — who are usually too sick to talk anyway. The focus is almost always on averting death, so when death becomes an inevitability, it’s difficult to switch perspectives.
“The humanity in health care … can be sorely lacking,” Cook said.
The wishes project helps to “dignify the death process,” she explained. “It ensures we never forget the story and the life of the person in the bed.”
Other doctors in her unit told Cook that the project reminded them why they had pursued the profession in the first place.
John Hansen-Flaschen, a University of Pennsylvania professor and a doctor at the school’s hospital, wrote in an editorial for the Annals of Internal Medicine that the project was “wonderfully fresh, albeit incomplete.” He noted that Cook’s study didn’t follow the typical procedures for scientific research — there was no control group, no before-and-after comparison.
But family members were enthusiastic about the wishes. They gave St. Joseph’s ICU high ratings on an end-of-life care survey, and extolled the project in post-mortem interviews.
“I just remember everybody being so amazed by the creativity and the ability for things to be facilitated,” Santucci, the young man who married his fiancée on her death bed, told Cook’s team. “A lot of people got represented through those wishes and … everybody kind of had a piece in what happened that day, and I think that’s huge.”