On Being Offered the “Choice” of a Nursing Facility or a Grave

A 40-year-old man with ALS died for lack of sufficient in-home care on August 9th. He qualified for some in-home services, but needed more as his disease progressed. He was only offered a nursing facility over 4 hours from his family. For him, that was a fate worse than death — not the ALS, but the isolation of a nursing facility. Since he lived in Canada, he was eligible for a lethal injection under Canada’s euthanasia law.

Here’s a summary of Sean Tagert’s story by our Canadian sister organization, Toujour Vivant/Not Dead Yet:

SEAN TAGERT DIES FOR LACK OF HOME CARE

• Sean Tagert was a 40-year-old man with ALS living in British Columbia. He needed 24-hour in-home assistance in order to live independently. Local health authorities would only cover 20 hours of care per day, and suggested that Mr. Tagert move into long-term care if he needed more. The only available facility was in Vancouver, 4.5 hours’ drive from Mr. Tagert’s Powell River home and family.  He refused, saying death was preferable to the isolation of institutional life and being far away from his son. After relying on aging relatives to fill gaps in his care over a few weeks, Mr. Tagert died by euthanasia on August 9th.
• This is exactly what we feared would happen when Bill C-14 was introduced. Although news reports have said that Mr. Tagert “chose” to end his life, it was not what he truly wanted. He made it clear that death would be an escape from difficult circumstances. Dr. Leonie Herx, a palliative care physician from Toronto, called for “a public outcry around peoples’ right to access care, to support them in choosing … life rather than just a right to death. A person should have the resources provided to live at least in their community, not to have to move … to another city.”

Here’s another story about Mr. Tagert in the press. But don’t think that people with ALS don’t face the same pressures to die in the U.S. In spite of decades of advocacy by aging and disability advocates, the U.S. is still stingy with in-home long term care services and is all too ready to shuttle people off to nursing facilities.  As TV/NDY noted in its webcast:

• Mr. Tagert’s situation is similar to several [U.S.] legal cases that were brought in the 1980s where people with spinal cord injuries who were stuck in nursing homes won the right to have respirators turned off.  These rulings, sometimes referred to as the “Give me liberty or give me death” cases, resulted in the deaths of David Rivlin and Kenneth Bergstedt. Larry McAfee, who won a similar case, was contacted by disabled activists from a Georgia independent living center, who helped him obtain funding for personal care attendants and move into an apartment.  The families of Rivlin and Bergstedt rejected approaches from the disability community.

Eight percent of those who have died by assisted suicide in Oregon had ALS, according to the official state reports, the highest percentage category after cancer. Of course, Oregon doesn’t collect much data, so we don’t know for sure about the in-home care situation for these individuals, except that the number one reason for requesting assisted suicide is reported as “loss of autonomy” (91%) and and the 5th reason is “burden on family, friends/caregivers” (45%). These reasons scream about a lack of consumer controlled in-home personal assistance services.

So there’s no logic to splitting hairs between Canada and the U.S. Whichever country we live in, people who need in-home services have every reason to worry about being given the “choice” of a nursing facility or a grave.