It's a human right, too, palliative care experts say
Top photo, Melissa Sullivan and her husband, Chris Sullivan, who died six years ago. Bottom photo, (from left) Laurie Anne OBrien, Melissa Sullivan and Dr. Susan MacDonald discuss end-of-life care. Top photo submitted/ bottom photo by Danette Dooley/Spec
In 2003, when 38-year-old Chris Sullivan was dying, he was determined to do so at home, surrounded by those he loved - his family, friends and dogs.
His wife, Melissa, then 32, was his main caregiver.
"It meant the world to Chris to be at home, in the comfort of his home …," she recalled. "Physicians used to come to the house to check in on him. Chris used to say that Dr. Pat O'Shea had a wonderful fireside manner, instead of bedside manner," she adds with a smile.
Chris and Melissa had only been married two years when he got sick.
"He got diagnosed with cancer of the bile duct. … He lived for a year-and-a-half (after his diagnosis)," Melissa says of Chris, who was a successful corporate lawyer.
As his last weeks turned into months, Melissa realized she needed help caring for her husband.
"I was afraid to sleep at night," she says frankly. "I was afraid if I woke up at night that he may not be with me the next morning. I didn't want to scare Chris with those thoughts. So how I brought the nurses into the picture was that I told him I needed my sleep at night and that I'd feel more comfortable if I had somebody there to watch over me while I slept."
Community health nurses provided invaluable care, she said.
"Chris often would be afraid to sleep at night, so they'd be up with him offering him support or watching the America Sailing Cup with him on TV. They were completely wonderful people."
Melissa said she has no regrets about caring for her husband at home, with the help of a supportive palliative care team. She's fortunate she had the resources to do so, she says.
"Chris was a very strong man - a rugby player; an avid sailor, very well respected by many people and had lots of friends. He was cherished by everybody and is still remembered today fondly," she says, glancing at a photo of them sailing.
But not everyone gets palliative care, and that's a matter of concern to Laurie Anne O'Brien, the regional palliative care manager/consultant/educator with Eastern Health.
End of life care should be a human right, she said.
"You automatically think when someone is at a stage where they are diagnosed and are terminally ill that there will be people there for them, there will be good pain control, there will be a place where people understand what to do and how to support them, but that's not always the case."
And palliative care should begin as soon as a person is diagnosed with a terminal illness, rather than when they are near death, she added.
The person who is dying doesn't have to be hospitalized or placed in long-term care. Instead, supports should be available to allow them to remain at home until the end, if they choose.
Members of the palliative care team can offer psychosocial, emotional and spiritual support, O'Brien said, and help people understand important issues, including pain management.
Palliative care doesn't end when the person dies, either, since those left behind need to be supported through bereavement and grief.
Dr. Susan MacDonald, Eastern Health's divisional chief of palliative care and an associate professor of medicine and family medicine with Memorial University, agrees that while it's everybody's right to receive palliative care, many people do not.
"There are just not the resources to permit people to die and live where they want to live and die. … We have to advocate for patients and families when they are at the most vulnerable time of their life," she said.
"They don't have the energy to do that and they don't know the health-care system the way we do. So, part of our job is to support their rights."
MacDonald said the role of family physicians in palliative care is crucial.
"Palliative care cannot function without family doctors. … They are ideally suited for looking after patients and their families who are suffering a terminal condition. My concern is that family physicians are often not very well supported to do that job. They're not properly remunerated."
MacDonald said since most people will need some type of palliative care before they die, they should insist that the government provide the programs and services needed to meet people's needs, both in hospital settings and in the community.
"It's in the interest of every single reader to support, be interested in and to lobby for palliative care in this province because they will need that. It's not just for someone else," she says.
"We come into this world surrounded by peace and love and caring. We should leave the world surrounded by peace, love and caring."