By Amy Hasbrouck and Taylor Hyatt, Toujours Vivant – Not Dead Yet (TVNDY)
Since last summer, TVNDY has been gathering stories of people who have been caught in the gears of the medical aid in dying (MAiD) machinery. Most were people who asked to die, but really needed help to live. Many were euthanized, or had life-sustaining care withdrawn or withheld, or simply pled their case via the media in the court of public opinion.
Over the next few months, we’re going to tell these stories of how and why the system has failed people who needed help to live, not to die, in preparation for the five-year review of the MAiD law that is supposed to begin this summer.
Archie Rolland was a landscape architect who lived with Amyotrophic Lateral Sclerosis for 15 years. From 2007 to 2015 he was treated at the McGill University Health Centre’s Chest Institute. In 2013 he wrote an opinion piece in the Montréal Gazette about his experience of “incarceration” in long-term care, and his fears about upcoming changes in his living situation.
In January of 2015 Mr. Rolland was among 17 people, most of whom used respirators, who were transferred to Lachine Hospital’s Camille-Lefebvre long-term care wing, in advance of Montreal Chest’s move to the newly-built “super hospital.” According to a report in the Montreal Gazette, “only 70 per cent of the nursing staff made the transfer, and fewer than half the hospital attendants.” As well, attendants were put on a rotating schedule, which disrupted continuity of care.
According to the Gazette, problems arose as soon as residents moved to the Lachine facility, and Mr. Rolland documented them in emails to the head nurse, the ombudsman, hospital officials and a patient’s committee representative. He reported long delays after pressing the call button, not being provided water, poor positioning causing bed sores, and more dangerous problems. In one incident, staff failed to remove mucus from his throat, then ignored the respirator alarm until his mother ran to get help. On another occasion, attendants leaned on his bed rail, jamming the call button against his head and “laughed at me in my distress.”
Other families also contacted the media about problems caused by staff shortages and rotating schedules and multiple reports appeared in the Gazette detailing the problems at the Lachine facility. In the summer of 2016, three doctors resigned because their “pleas for additional support led nowhere.”
By July of 2016, Mr. Rolland had had enough. In emails to the Gazette reporter he emphasized that it wasn’t his illness that was killing him; he was tired and discouraged from having to fight for necessary and compassionate care. On July 4 he left the Lachine facility and made the 10-hour trip to the family’s country home in Métis-sur-Mer. Three days later he ordered that his respirator be turned off.
Though transfer to another facility was mentioned as a potential solution, in none of the reports was the possibility raised that Mr. Rolland could have lived at home with attendant services. The residents of the long-term care facility (referred to as “patients” rather than “people”) and were described as “hooked up to” respirators and feeding tubes, rather than “using” such equipment.
Where is the choice in that?
Toujours Vivant – Not Dead Yet (TVNDY)–is a non-religious organization by and for disabled people. This article first appeared here and was reposted at Euthanasia Prevention Coalition.