B.C. man with ALS chooses medically assisted death after years of struggling to fund 24-hour care

A Powell River, B.C., man with amyotrophic lateral sclerosis (ALS) opted for a medically assisted death last Tuesday after years of struggling to fund 24-hour care that kept him close to his son.

Sean Tagert, 41, leaves behind an 11-year-old son. 

Tagert had been diagnosed with ALS, also known as Lou Gehrig's disease, in March 2013.

"For years he endured the steady deterioration of his abilities, until suffering cardiac arrest in late October 2017," read a post on his Facebook profile written after his death. 

The disease had cost Tagert his ability to breathe on his own, speak, walk and feed himself. 

Speaking to CBC last year, Tagert shared his frustration trying to get 24-hour care at home.

Vancouver Coastal Health offered him 15.5 hours of home care under the Choice in Supports for Independent Living program but not the 24-hour care he needed. 

Tagert was later offered as much as 20 hours per day, which his doctor said was still not enough. 

Relocation was not an option as that would have taken him away from his son, of whom he had partial custody. 

"It would be a death sentence," Tagert told CBC News last September.

At the time, Tagert said he needed an extra $263.50 per day to remain in his home.

"Ensuring consistent care was a constant struggle and source of stress for Sean as a patient," read the Facebook post in his honour. 

"The few institutional options on hand, Sean pointed out, would have offered vastly inferior care while separating him from his family, and likely would have hastened his death," the post read.

Tagert pieced together a suitable care facility in his own home, which included an expensive saliva-suction machine that was needed to prevent him from choking, according to the post.

"We would ask, on Sean's behalf, that the government recognize the serious problems in its treatment of ALS patients and their families, and find real solutions for those already suffering unimaginably," read the post. 

'Funny, active and vibrant'

In the post, Tagert's family remembers him as "particularly funny, active and vibrant." 

Tagert was born in Texas but spent most of his life in Canada. He grew up in Mackenzie, B.C., before moving to Powell River. 

"Above all else Sean was devoted to his son, Aidan," read the post. "Sean often said that Aidan was his reason for living, and had a close relationship with him right to the end."

The social media post also says Tagert did not want a memorial service and asked those who wished to remember him to donate to the ALS Society of British Columbia and to Communication Assistance for Youth and Adults (Caya).