When you hear the term: ‘palliative care,’ words like ‘death’ and ‘dying’ likely come to mind, but patients say they’re discovering it’s much more about living.
Palliative care is still uncharted territory for Dorothy Sweet, especially when it comes to conversations about end of life care.
Her husband, Brian, visits Dorothy often at a nursing home in Bedford, N.S. and the two enjoy their time putting puzzles together and playing cards.
While it wasn’t an easy transition, Dorothy says she’s happy now living in the Blueberry Hills wing at Northwood.
"My husband grows blueberries and they said, ‘oh that's the reason why you like Blueberry Hills… I said yes it is, they take good care of you here.’”
Dorothy has had severe rheumatoid arthritis for more than 20 years. Before moving to the home she had compression fractures in her back and was in a wheel chair. She’s now on a liquid diet.
“She decided to come, but her biggest disappointment at the time was that I didn’t come with her,” says Brian.
Life’s twists and turns have become second nature for the couple as they’ve been married for years. Brian says they met when one of Dorothy’s co-workers sent her running to Brian’s business each day.
“I don’t know what clued him in that there might be a little attraction there, but he kept sending her with a daily bank deposit and telling her to bring it to me,” he says.
Palliative care nurse, Pam Slobodesky has been working with Dorothy since she moved into the home, even though she’s not in need of that level of care yet.
Slobodesky says pre-planning is necessary for palliative patients because it’s challenging for those under a great deal of duress in health crisis to make proper decisions.
Brian says Slobodesky allowed them to feel very at ease despite the difficult subject matter.
“I mean you're talking about death and yet we were able talk about a taboo subject, discuss the things that were important and get decisions from Dorothy about her life,” Brian says.
Dorothy says her care takers treat her like a family member at the home and she’s been able to have serious discussions about her plans with Slobodesky.
“I told her that I wanted to be buried in Whyburn, which is in Nova Scotia, Brian was born and brought up there,” Dorothy says. “I know I’m going to go sometime.”
To put it simply, Slobodesky says, “life is fatal and we don’t embrace that.”
Working directly with people who are dying, Slobodesky says she has realized that death is also a part of living.
“It is,” she says. “It’s a journey we’re all going to have to take at one point in time.”
A journey, Slobodesky says her and a team of medical experts hope to make as comfortable as possible by learning what patients want at different stages of their lives.
Patients meet with a palliative care team and they’re asked questions to ease their transition and dispel any misconceptions about end of life care.
“Are you a spiritual person? Do you have a special teddy bear? Do you like to wear lipstick? Do you like to have your earrings on?”
Slobodesky says when a patient becomes close to death they can remain in the care home.
“They do not have to go to hospital. We keep them in their own beds, in their own rooms, in their own surroundings."
A new private hospice facility is under construction in Halifax, as an alternative for patients in need of palliative care.
Palliative care physician, Dr. Rob Horton says the hospice facility will offer patients a way to ensure their last days are comfortable and not spent in an emergency room.
"Instead of somebody waiting for four days in the emergency room for a bed, they're more likely to get that bed that night because somebody who's in a bed that could be better served in hospice moves to that bed,” Horton says. “It's a bit of a chain reaction."
Horton is on the Hospice Halifax board for the first private, residential hospice in the city and the third in the Maritimes. There are other facilities in Saint John and Fredericton and others will soon open in Cape Breton and Annapolis Valley.
Hospice Halifax offers 10 beds and Horton says more are needed.
"We do foresee, once we get this hospice up and running and show that the model works, you'll see other hospices."
He predicts the new facility will also help alleviate some of the overcrowding in emergeny rooms and benefit the quality of life for patients.
“So this allows that need to be met with expert caregivers, with health professionals in an environment that is home like, private, peaceful and supportive,” Horton says.
Horton says hospice care is the next best thing to staying at home, so that patients like Dorothy Sweet can complete the puzzle of life on their own terms.
With files from CTV Atlantic’s Priya Sam.
