Lanark County Chapter: End-of-life care planning: We need to have ‘The Talk,’ with mum and dad

Click here to read “End-of-life care planning: We need to have ‘The Talk,’ with mum and dad” by Desmond Devoy – Inside Ottawa Valley, November 11, 2015

Justin Trudeau needed a plan.

Not to become prime minister – but when he sat down with his father, Pierre Trudeau, he needed to work out a plan for carrying out his pere’s wishes for any end-of-life care he wanted to have.

Pierre had had children later in life, so for Justin, the serious, adult discussion, with his father, came sooner than it should have for most children to have with their parents.

But Sharon Carstairs was glad that he had it nonetheless.

And if the Trudeau family had a plan for advanced care planning, she believes that every Canadian family should have such a plan.

The retired Liberal senator from Manitoba was the keynote speaker at a workshop for seniors on navigating the healthcare system, held at the Kinsmen Community Pavilion, at Lower Reach Park in Smiths Falls on Nov. 3.

The event was sponsored by the Canadian Association of Retired Persons’ (CARP) Lanark County chapter, with the support of Mills Community Support and funding from the Ontario provincial government.

The day before the federal election, Carstairs had been reading the younger Trudeau’s book, Common Ground, when she came upon Justin’s passage on talking to his father about end-of-life care, before his death in the autumn of 2000.

“We now have the prime minister, as of tomorrow, on side,” said Carstairs. “As a Liberal, I’m very pleased with the election on the 19th.”

She added that while if there were national strategies for diabetes, AIDs, and cancer, why not a national strategy for palliative care?

“National standards are a good thing,” said Carstairs. As a long-time provincial politician, she hastened to add that “I’m not suggesting that the federal government should go in and run hospitals.”

While she said she hopes that the new Liberal government will do more from Ottawa, she also wants the conversation to start at home.

“Plan. Take a moment to plan,” she said. She joked that her husband, John, knows of her end-of-life wishes, and if he fails to follow through on those wishes, “I’ll haunt him for the rest of his life!” she joked.

“Make sure it is a legal document,” she said. “And not something you pick up at your doctor’s office.”

Carstairs left politics in 2011, saying that “politics can look after itself…I didn’t much like what was happening in the senate at the time,” and she has now dedicated herself to serving as vice chair of the OutCare Foundation. For her, the issue of palliative care has been a deeply personal one. Her mother, a nurse, did not die they way she would have wanted.

“The doctors did not follow her request,” said Carstairs, for her DNR order (Do Not Resuscitate.) “Canadians are not dying well.”

She entered the senate in 1994, and back then, there was no consensus on doctor assisted suicide. The year earlier, the Supreme Court had ruled, in a 5-4 decision, against allowing this practice, and a senate committee investigating the matter in 1994 was also split, 4-3, against recommending such action. At the time, students were receiving only one hour of class time on pain relief training out of four years at medical school.

Now, 21 years later, the Supreme Court has ruled unanimously to allow for this practice, but myths, as she sees them, still linger about end-of-life care, such as providing medication for unbearable pain.

“We still have this myth that you will become addicted,” she said. “It is a myth. Does it matter?”

For Carstairs, end-of-life care means “living well until the very end… it’s about living well.”

Back in 1994, only five per cent of Canadians had access to quality end-of-life care. That number stands at an improved 35 per cent now, but she feels that it could be higher – and one of the ways to be your own advocate in the healthcare system, is to get your wishes together now.

As she knows herself, you never know when you will need it.

In December of 2005, her son-in-law Paul came home from teaching school on a Thursday night. He was not feeling well and so went to bed. When he woke up on Friday morning, his wife, Carstairs’ daughter, thought he was delirious. She took her husband to a walk-in clinic. The doctors there dispatched him to a hospital, where he waited in the emergency room for three hours, before being sent to intensive care.

He was diagnosed with autoimmune amnesia, which is, essentially where “his red blood cells are eating each other.”

He was pumped with drugs, had his spleen removed, and was given eight blood transfusions. But almost just as chilling for Carstairs was that his son-in-law did not have a will.

“Like most young people, they were going to live forever,” said Carstairs. The revelation left her feeling frustrated – she had slipped will kits, on CDs, into her children’s Christmas stockings the year before. “I thought my family would have gotten the message.”

In November of 2006, her family again had a health scare. Carstairs was in Halifax, when her daughter Jennifer phoned to say that Carstairs’ other daughter, Catherine, was in hospital in Kitchener, Ont. Carstairs wasted no time flying to Toronto, and hustling onwards to southwestern Ontario, to discover that Catherine had non-Hodgkins lymphoma.

When Catherine saw her mother in the hospital, her first words to her mother were: “You’re not going to be pleased with me, mum. I don’t have a will,” even after what her brother-in-law had been through.

Thankfully, “she too managed to be a cancer survivor,” like her father, but, it underscored “the need to get all of our affairs together.”

The federal government has until early next year to change its current euthanasia laws, but, considering the change in government, the Trudeau Liberals may ask for an extension, as public hearings on the issue were cut short because of the federal election last month.

While other areas like The Netherlands, Switzerland, and Belgium, and American states like Oregon and Washington, have some form of doctor-assisted suicide laws on the books – with Quebec soon to join those ranks – she pointed out that “less than six per cent of the population will choose to die that way. I want to support he 94 per cent,” who may choose to have a DNR, for example, or to live out their final days in a hospice.

“If I am not competent, I don’t want to be hooked up to a bunch of machines,” she said. “We don’t need to change any laws to make that decision.”

But she stressed that families need to be on the same page. One person she spoke to assumed that one of her sons, a doctor, would acquiesce to her request for a DNR order. She was glad when she spoke to her son beforehand, finding out that he would not honour her request.

“I will do whatever I can to keep you alive,” she said. “But that’s not what I want,” the woman answered.

Her other son was chosen to handle her end-of-life care instead. The advanced care directives will not only give the family peace of mind, but they will help health care staffers too.

“They know what is in the best interests of the patient, but they cannot override the family’s wishes,” Carstairs said. “Is it an easy conversation? Not really.”

But it is a conversation that needs to be had.

Following on from this workshop, and an earlier workshop held in Almonte’s Old Town Hall on Oct. 20, a third and final CARP workshop will be held at the Perth Civitan Club hall, 6787 Highway 43, on Tuesday, Nov. 17, from 9 a.m. to 1 p.m.