Ensuring quality of living at end of life 'pretty intense,' son says
'There's just so much you don't know and there's so much you're on your own for'
There's no guidebook to navigate the highs and lows of looking after a family member in their final months at home, says a son who was tempted to write one.
Pat Mackey was surrounded by her family at her home in Toronto when she died of cancer in 2014 that had metastasized to her brains and lungs.
"You want to hang around but not at the expense of the quality of your life," she said in a North York General Hospital YouTube video. "My plan was that I would die in hospice. I would not impose the dying in my house because I felt that the house was a sanctuary for the family and that was something I was depriving [my husband] Mike and the kids of."
Then things changed.
"Funnily enough, Mike and I have been measuring for a hospital bed and the sofa will fit here, and I can see my birds in the trees. And he said that would be my choice, not only for me but for himself."
It's about living and the quality of living when you're faced with something that is frankly inevitable for all of us.- Jon Mackey
To be surrounded by love was most important, she said. Palliative care gave her energy to enjoy her last days without focusing on the illness.
Son Jon Mackey said his mother always put others first. Inspired by how she gave so much, Mackey, his father and brother felt like they could write a book to guide others through helping a loved one to die at home, with a network of family, friends and institutional help.
"There's just so much you don't know and there's so much you're on your own for," he said in an interview Wednesday.
"Inevitably in the process of dying, the quality of your life deteriorates. The family is kind of left there hanging on to the very few good moments and they get lesser and lesser. And are you hanging on too tight when maybe it would be better to kind of let go, right? It's pretty intense. There's high highs and low lows. There's big stress issues and little stress issues but they're all magnified."
Mackey said he aims to shed light on an aspect of health care people don't like to talk about.
"It's about living and the quality of living when you're faced with something that is frankly inevitable for all of us, not a terminal disease but death, and just handling it in a way that is going to be easiest to digest for all those involved."
Palliative care provides comfort and dignity for patients who are living with a life-threatening illness, including physical, psychological, social, spiritual and practical issues. It includes managing pain and other symptoms, and helping patients cope with loss and grief. It can be started as early as the time of diagnosis.
End-of life care is a priority for older adults, but a Health Quality Ontario reports suggests it often begins too late or not all.
Earlier this week, the agency said it found gaps in palliative care. About 43 per cent of the 54,000 residents who had palliative care services last year received it at home in their last month of life. Nearly two thirds died in hospital.
The report's authors acknowledged there are opportunities to provide palliative care earlier.
A study of U.S. Veterans Affairs facilities suggested those with cancer and dementia received palliative care consultations more often than those with late-stage kidney disease, congestive heart failure or chronic obstructive lung disease.
In Wednesday's issue of the American Heart Association's journal Circulation, researchers said patients with heart failure who watched a short video depicting different levels of end-of-life care were more likely to choose comfort care over life-prolonging care such as CPR and being placed on a breathing machine.
The study's lead author, Dr. Areej El-Jawahri, said they found when patients were better informed, it's easier for them and their doctors to discuss end-of-life issues.
With files from CBC's Amina Zafar