Dr. Fowler was at her bedside and discussed options. The main goal would be to have her live without the ventilator, but that was appearing less likely, as her left lower lung lobe was in the habit of collapsing every four or five days.
There was a program at another hospital that could train her family and caregivers to manage her condition, so she could eventually go home, but the waiting period to enter it was up to six months.
Would that be too many months to stay on the ventilator? She nodded. Was two months too long? She nodded again. One month? Ms. Isacovics shrugged her shoulders.
She was moved to a semi-private room on the third floor, and her bed was placed next to a big window that looked over hospital grounds; the tile ceiling above her was painted with a forest.
But no matter how inviting the hospital tries to make this unit, it is an institution. Staff members go home to their lives and families settle into visiting routines, but patients stay on their ventilators, sleeping or staring at the ceiling. It may not be much of a life, but it’s theirs.
To help doctors and nurses see these patients as something other than inert, mute bodies in beds, many have “Get to Know Me” sheets taped to the wall next to them: Ms. Isacovics’s form said she liked Bob Marley, ballet, bridge and swimming; she loved mystery novels and on TV, Dr. Phil, The Ellen DeGeneres Show and the medical show House.
Her family said she had adjusted admirably to the difficult MS diagnosis. She had a happy domestic life, although as in all marriages there were tensions: Ms. Isacovics always had made her job the priority, and couldn’t care less about food, bringing the same lunch to work for 15 years, a cheddar-cheese sandwich on whole wheat and an apple. While Mr. Goldmacher was a family lawyer, also a demanding job, he insisted on the home-cooked family dinners he made for the three of them every night.
Whenever he lamented that she had never cooked, she would remind him that she made meatballs in 1986 – or was it 1987?
Initially, Mr. Goldmacher had expected her to get over this hospital episode quickly and be home. Now, he didn’t know what to expect. “I had no idea that MS can have this kind of effect on your respiratory system,” he said.
But if life in the long term meant being on a ventilator, Ms. Isacovics wanted no part in it. When a reporter asked in late July what she wanted, she pointed to letters on her alphabet board: “D-E-A …” She paused.
“Are you trying to spell out ‘dead’ ?”
She nodded. A tear rolled down her left cheek.
In a report on end-of-life decision-making earlier this month, the Royal Society of Canada noted that although competent adults want to be involved in making decisions about their care, most fail to complete advance directives or communicate their preferences to family members or significant others.
That’s certainly what they see here at Sunnybrook.
“Among patients coming to hospital and to the ICU,” Dr. Fowler said, “it is much less common that patients have had the detailed discussions with their families and physicians needed, to help know the extent and for how long patients would want to receive aggressive, life-supporting care.”
At least Ms. Isacovics could make her own treatment decisions.
Still, there was no hurry: She needed to sit with it for a while, see her family and wait to find out if, just maybe, she could get off the ventilator.
What she hadn’t counted on was Linda Nusdorfer, an advanced-practice nurse, who roamed the corridors of critical and cardiac-intensive care,functioning as a fairy godmother – granting wishes to those who are on a ventilator, typically for 21 days or more.
By the time she gets to them, she said, most patients feel “very discouraged.” Some have lost the will to live.
Often, their requests are surprisingly simple: ice chips to suck, and eyeglasses or hearing aids to be brought in from home. Ms. Isacovics, however, wanted to feel the summer sun outside with her family – including her dog, Denis.
The plan would require a respiratory therapist to manage her oxygen, plus a personal-service worker to help push her wheelchair, along with Ms. Nusdorfer.
When the day came, Denis arrived in the lobby; his white, floppy ears looking almost long enough to mop the floors. When he was placed on Ms. Isacovics’s wheelchair, his excited, sloppy licks suggested a fond remembrance.
Outside, in front of the hospital, on a green area with trees near the cenotaph, Ms. Isacovics leaned back in her wheelchair, basking in the sun, a smile on her face.
Her daughter, Beatrice, 17, stood near her mother’s wheelchair, watching her, and said, “It feels like home.”Report Typo/Error
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