Gordon Self of Covenant Health and Michael Rock discuss support for Rock's daughter Siobhan who suffers from Lou Gehrig's disease.
EDMONTON – Palliative care funding and resources languish because society is too afraid to face its own mortality.
"Death is inevitable," said Joe Comartin. "Society must see its way through to talk about it. There is a need for discussion about the end of life."
To this end, he suggested "funding be made available for a national campaign of awareness for that kind of planning."
The NDP member of Parliament made his remarks at a Covenant Health press conference Nov. 18 at the Grey Nuns Community Hospital. At the event, Covenant Health endorsed the recommendations of the report of the Parliamentary Committee on Palliative and Compassionate Care.
Comartin, one of the co-chairs of the committee, called for "the federal government to establish a secretariat to provide leadership, set national standards, provide research and move palliative care forward."
Collaboration in developing the 191-page document, titled Not to be Forgotten: Care of Vulnerable Canadians, crossed party lines, something Comartin said has not been seen since the coalition governments of the great wars.
The report focused on four pillars - palliative, hospice care, elder abuse, suicide prevention. Palliative care received the major focus of the committee, with Comartin urging further attention be applied to other health areas of concern such as elder abuse.
The study was motivated to "fight the euthanasia bill" as well as wanting to determine the "nature of palliative care, hospice care in the country."
"It is quite clear palliative care and hospice care in this country is underfunded," Comartin told media and palliative medical care staff at the hospital.
"There are major areas of Canada where there are no palliative care services whatsoever – rural areas, First Nations reserves, even major cities where care is available in a specific area but eight to 10 km away there are no services at all.
"There is spotty coverage right across the country. We are nowhere as advanced as we are in chronic care."
Comartin took time to applaud the comprehensive palliative care practised at the Grey Nuns Hospital. Calling it a "model that could be used elsewhere in Canada, he said, "Hopefully we can get the rest of the country to catch up to you."
Comartin said the cost of palliative and hospice care for the average case of cancer is $45,000. "Well, most Canadian families cannot afford that $45,000."
Touching on suicide, another of the study's pillars, Comartin reported "Canada, in the 1990s, developed a suicide strategy that has since been adopted by at least 10 other countries and a number of states as well."
Almost 4,000 people a year in Canada die from suicide, a figure he said could be cut by 30 to 50 per cent if the strategy was actually implemented.
Another pillar, elder abuse, is relatively hidden because the person being abused is too ashamed or afraid to report the abuser.
"It is estimated at least 10 per cent of seniors will be abused before they pass away, either physically, psychologically or financially," said Comartin.
Present in the audience was Michael Rock, a lay Oblate and professor emeritus in Ottawa.
His daughter Siobhan, a 40-year-old mother of three, was diagnosed with ALS Lou Gehrig's disease several months ago.
Lou Gehrig's disease – amyotrophic lateral sclerosis, or ALS – is a disease of the nerve cells in the brain and spinal cord that control voluntary muscle movement. As the nerve cells waste away or die, the muscles progressively weaken, resulting in twitching and an inability to move the arms, legs and body.
With the spectre of assisted suicide hanging over Canadian society, Siobhan told Covenant Health executive Gordon Self to take the following message to the audience, "I choose to be happy and I choose to live."
In a phone interview later, Siobhan said she broke the news to friends and colleagues by inviting people to a party, including the diagnosis in the invitation.
"I wanted to give it a positive twist" so she invited "people that meant something to me" from former employers to elementary school friends." More than 200 came to the event.
Saying she has been supported by the "great team at the Ottawa ALS clinic, she also wants people to know the ALS society of Canada "does not get any funding for research other than private donations. That's the scary part."
Her father told her over the speaker phone how much she has taught him by her response to her live-threatening condition.
Her response was immediate and spoken with pragmatic directness.
"It's my personality to do the best I can with what has been given to me. I am grateful. I practise gratefulness and being thankful. That is what helps me to get through."