'Going out with my boots on': Tim Regan used his last days to lobby for a clearer path to assisted death

 
 
 
Tim_Regan

From the time he was 16, Tim Regan knew he didn't want to suffer a long, drawn-out death. 

As a teenager, Regan witnessed his aunt's painful death in hospital, when doctors refused to remove her intravenous.

"She took five days [to die]. That to me, is torture," Regan, 79, remembered, speaking to Dr. Brian Goldman, host of White Coat, Black Art in December. 

Later in life, Regan saw  his father-in-law "force-fed" and put into "active care" on the last day of his life, undergoing a major operation.

"I believe they spent a million dollars on the last day." 

So when he was diagnosed with inoperable liver cancer last summer he knew what he wanted to do. 

Tim and his wife Gail exchange a last look of love on the day he died. (Courtesy of the Regan family. )

"As soon as I heard of Medical Assistance in Dying, I wanted MAID. I've had a lifetime of having my will turned towards a non-distended death," Regan said in an interview from his Toronto home, the day before he had a medically assisted death.

Last December, one year after MAID became legal in Canada and a little before Christmas, Regan had a medically assisted death in his Toronto home, surrounded by his loved ones, as his carefully chosen playlist of music played 'Ave Maria.' 

"He knew what he wanted."

Regan's youngest daughter, Honor Regan Ireland took on arrangements for her father's final wishes, but had no idea of the roadblocks she'd encounter. 

Many patients who have been approved for MAID can't find health providers to assist them or face institutions that refuse to perform assisted death.

The Regan family had a hard time even getting a doctor to talk about it, never mind approving it.

"We did a lot of running around trying to figure out how the system works, talking to doctors, and sort of flippantly being pushed aside, saying 'no, we'll talk about that later," Honor said.

Eventually the family found Dr. Sandy Buchman, a palliative care  physician at the Temmy Latner Centre in Toronto, who helped guide them through, and who helped Tim to die.

Buchman's help was vital; the nature of Tim's illness put him in a battle against time.

Under federal law, a patient must demonstrate competence at the time of the request and immediately before medical assistance in dying is provided.  

But Tim Regan's cancer led to a condition that could cause confusion.

"To me, that was such a cruel twist of fate that you have my dad, who since the age of 16 knows that he wants MAID. It finally becomes legal the year before he gets this diagnosis, and he's given a cancer that's going to  degrade his mind," Honor said.

Buchman and the family worried Regan might lose the capacity to consent, especially after Honor noticed her father showing signs of confusion. 

Medication cleared up his confusion, but Regan still had to undergo multiple tests to ensure he was able to give informed consent. 

It was a process that rankled him. He'd been clear about his wishes and he had the support of his family.  

"I have gone through eight assessments... It's excessive," Regan said. Part of his motivation for doing an interview before he died was to lobby for clearer path to assisted dying.

Regan and many right-to-die advocates would like the law to allow for advance directives which would let patients put their wishes to have MAID in writing, when they are no longer capable of asking for it.

"It is my right to go. Under my civil rights I should have control of that and it should protect the doctor from having to ask repeatedly....to get a right that I already have," Regan said. 

As Ave Maria played, Tim's loved ones placed their hands on him as they said goodbye. (Courtesy of the Regan family)

 A 2016 poll found that three quarters of Canadians approve of allowing advance requests for a planned death, but opponents argue that the system must have adequate safeguards to ensure that patients have not changed their mind at the last moment, and that they aren't being taken advantage of by outside parties who might benefit from their death. 

The federal government has promised to review advance directives as well a requests for assisted death by mature minors and for situations in which mental illness is the sole underlying medical condition. The final reports will be tabled in Parliament and available to the public by December 2018.

Not soon enough for Tim Regan. 

Worried that he might lose his right to MAID, Regan decided on a date for his death: December 12, 2017. 

"I do not want to risk losing my senses and being denied," he told Dr. Goldman the day before his death.  

Knowing the date did have an advantage: It allowed him to say goodbye to family members in meaningful way, something Honor says her father embraced.

"He wanted these deep human connections... he was able to really connect with every person who came to say goodbye in the last month." 

Dr. Buchman says many patients are opting for living wakes and funerals. He believes as more and more Canadians opt for MAID, rituals and attitudes around death will change. 

Tim attended his own living wake, and the family held an early Christmas party, which saw Tim make a grand exit, singing "So Long, Farewell" with his grandchildren, as a stairlift carried him up to the second floor.

"I just had to do it," Regan said with a giggle, professing his love for his grandchildren. 

"He was able to close his eyes and soak in the love," Honor said, remembering her father's final moments as friends and family laid their hand on him. 

While Honor is confident she gave her father the death he wanted, she still questions why it had to be so difficult, and why her father's final wish had to hang in the balance based on a competency test. 

"This was so clearly dad's wish...but you are left questioning your own morality. There's a lot of work to clean up this process." 

Despite his rough road, the day before he died, Tim Regan said he was content, and ready. 

"I'm going with love... and I'm not a-scared. I have had no fear because I've done my work," he told Dr. Goldman. 

"As you can see, I'm going out with my boots on." 

Original article here:

http://www.cbc.ca/radio/whitecoat/going-out-with-my-boots-on-tim-regan-used-his-last-days-to-lobby-for-a-clearer-path-to-assisted-death-1.4493373