The gift of extra time
After the first two months, seeing Mr. McCarthy exceeding expectations, hospice-care providers met with his medical team to decide whether he should be placed somewhere else.
“It was clear to us that the best place to care for Andrew was in our hospice,” said Ms. Emmerson. “The only other alternative was the hospital, as he was not able to return home.”
Ms. Kupina, meanwhile, made it her mission to make her husband's last months remarkable, bringing in dinners from upscale restaurant Scaramouche.
“I'm very lucky,” Mr. McCarthy said one day, pointing to a picture on his tray table of Ms. Kupina on their wedding day. It looked, he said, like one of those stock photos of a beautiful woman that you get when purchasing a frame, except that, in this case, she was all his.
Ms. Kupina planned his funeral in detail, as she explained over a large bag of red licorice one afternoon more recently – right down to the exquisite brochure with a Celtic braided ribbon and shamrock pin.
“I wanted something special,” she said: Standard-issue funeral-home booklets simply wouldn't do.
Mr. McCarthy initially had participated in the funeral arrangements, but then found them too upsetting to discuss.
On Feb. 12, nieces and nephews came in to read homemade Valentine's cards and sing karaoke. Mr. McCarthy's spirits seemed good, his attention interrupted occasionally by golf on the flat-screen television. He even imbibed a little Irish whisky. Ms. Kupina handed out loot bags of candy.
The next day, however, Mr. McCarthy was confused. He wasn't talking and he wanted no food or water. Ms. Kupina placed ice chips in his mouth for moisture.
For the next few days, Mr. McCarthy had trouble sleeping, despite medication, and seemed anxious.
“He wanted to die. He said: ‘You've got to help me, you've got to pull the plug,' ” Ms. Kupina remembered. “I told him, ‘There is no plug.' ”
She asked the Catholic priest who was scheduled to conduct the funeral service to come and reassure Mr. McCarthy, and spoke to the palliative-care doctor about adjusting his medication. She was with him until his last breath on Feb. 20, almost six months after he came to the hospice.
“One of the things that was so important to us,” said Ms. Kupina, “was that as much as he went there to die, he went there to live.”
Knowing how to die
Pain is the most common concerns of the dying, said Roger Ghoche, a palliative-care physician at Toronto Western Hospital, who also works at Kensington Hospice as part of its partnership with University Health Network. Restlessness, shortness of breath, nausea and vomiting, constipation, loss of appetite, insomnia and delirium are among the other most common symptoms.
Where most doctors focus on treating a disease, a palliative-care physician focuses on managing symptoms and allowing the body to do what it knows how to do.
“In the same way that a newborn knows how to be born and … do what it needs to do at the beginning of life, the body knows what to do at the end of life,” said Dr. Ghoche.
“It knows how to shut down, stop some of the organ functioning. It knows how to die. And because it's a process the body knows, it does it generally comfortably.”
But that does not mean that most patients know how to navigate end-of-life care, said Ms. Baxter of the CHPCA.
“Right now, we have a very, very fragmented system,” she said. “So if you need hospice [or]palliative care and you haven't been referred, you have no way of knowing where to go. It requires a lot of search in a time of crisis.”
Even when information is provided, it can be hard to know what to do and where to go. That's what Judith van Bastelaar experienced when her husband, 67-year-old Jos, was in the hospital in terminal condition. He had been healthy until developing an infection in his brain a week before Christmas, necessitating complex surgery. A subsequent infection in his nasal cavity required a second operation that he wasn't willing to undergo.
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