The family of a Canadian man suffering from amyotrophic lateral sclerosis (ALS) urged the Government of his country to change the way he treats patients, after he received a "death with medical assistance" After years of struggle to receive adequate care at home.
Sean Tagert, 41, was diagnosed with ALS, also known as Lou Gherig's disease, in March 2013. In October 2017, he suffered a cardiac arrest and was subsequently placed in a ventilator. His illness stole his ability to move his body, eat or talk and he communicated through a computer. His mental acuity was not affected.
At that time, Tagert's doctors recommended 24-hour home care, which is typical for a person who uses a full-time ventilator. Vancouver Coastal Health, Tagert's regional health authority, initially only offered 15.5 hours of care per day. Finally, after much effort, they increased their offer to 20 hours a day, which meant that Tagert had to pay $ 263.50 per day for the remaining four hours of required care.
Tagert and his family continued to fight for the coverage of a full day of care, but without success.
"Hello everyone. Lately I've been silent because I can't take it anymore, I'm tired. So last Friday I officially submitted my death documentation with medical assistance, with lawyers and doctors, all in the correct order. It has been more than a month since I filed my appeal to the Vancouver Coastal Health patient care department. They didn't even respond, ”Tagert wrote in a July 25 post on his Facebook page.
Tagert went on to explain that earlier that day, two Vancouver Coastal Health officials arrived at his house and refused to talk to him when they realized he was recording the conversation. Finally, they told their mother that they were there to cut funds for medical care hours.
"Welcome to the great Canadian health system, people," said Tagert.
On August 6, he received a "death with medical assistance" and died. In Canada, patients over 18 years of age who have been diagnosed with a terminal illness may request a "medically assisted death." The lethal medication can be administered by itself (assisted suicide) or, as in the vast majority of cases in the country, administered by a doctor (euthanasia).
Full funding for this procedure is available and advertised in hospitals throughout Canada.
"We ask, on behalf of Sean, that the Government recognize the serious problems in the treatment of patients with ALS and their families, and find real solutions for those who already suffer in an unimaginable way," reads a publication on its page from Facebook announcing his death.
The publication described the difficulties he faced in staying in his own home.
“Ensuring constant attention was a constant struggle and a source of stress for Sean as a patient. While he managed, with the help of many, to set up a proper care center in his own home (including an expensive saliva suction machine, necessary to prevent suffocation, obtained with the help of donations collected online). The 24-hour attention it required was extremely difficult, especially since the provincial government refused to fully fund home care, ”says the publication.
Tagert had partial custody of his 11-year-old son, Aidan.
“Above all, Sean dedicated himself to his son. Sean used to say that Aidan was his reason for living and that he had a close relationship with him until the end, ”says the publication.
Since Tagert's death, Canadian critics and palliative care physicians have called for changes in the way the country's health system handles patients with complicated health needs.
"No one should feel that death is the only option due to lack of attention," Dr. Leonie Herx, a palliative care physician in Toronto, said on Twitter.
Herx noted the paradox that Canadians currently have the "right" to die with medical assistance, but not palliative and disability care.
"We must do better for vulnerable Canadians," he said.
The ALS Society of Canada did not specifically comment on the Tagert case, but CNA received a statement from CEO Tammy Moore, which said: “People living with ALS should have access to personal care and palliative care adequate to meet your needs".
Death with medical assistance is fully funded in the Canadian health system.
Translated and adapted by Diego López Marina. Originally published in CNA.