Long lives must also be worth living
They were, he says, inseparable for 59 years of marriage. Now 84-year-old Fred Rieser is suing a Niagara Falls long-term care home, saying staff did not include him in discussions about his wife’s pneumonia treatment before she died.
As the Star’s Peter Goffin reports, the lawsuit claims 88-year-old Alma Rieser was “not referred to hospital, provided with appropriate medication, X-rays, diagnosis (or) medical treatment.”
In the four days between her diagnosis and her death last February, Rieser told Goffin that no one — including the Millennium Trail Manor physician — spoke to him about Alma’s treatment. Understandably, Rieser believes that his input, such as a recommendation for hospital care, might have saved her life.
Blocked from advocating for Alma, who suffered from Alzheimer’s disease, Rieser is right to speak out on an issue that is sadly commonplace in Ontario long-term care homes.
His grief also speaks to a wider reality: Ontario has an aging society with rapidly rising dementia rates. The Alzheimer Society of Canada says 564,000 Canadians have dementia with another 25,000 new cases diagnosed every year. That means families and friends will be increasingly tasked with the oversight of resident care — and good communication is key. It’s also a legal requirement.
Informed consent for medical treatment is mandated by the province and the College of Physicians and Surgeons of Ontario. Both must do a better job of holding incommunicative medical staff to account.
As well, the Health ministry must ensure that families are properly educated about their rights — including the rights of residents (and their substitute decision-makers) to “participate fully” in the development, implementation and revision of their own plan of care. It’s pretty straightforward.
Ongoing Star investigations into long-term care homes have detailed multiple cases of families who were not informed about serious health problems, from pneumonia to deep, infected pressure ulcers.
Lori Dekervor, for example, filed a lawsuit last fall against Revera, one of Ontario’s largest care-home chains, claiming that she learned of her father’s leaking pressure ulcer after visiting him in hospital — not from repeated conversations with staff at his Toronto nursing home. He died, in agony, a short time later.
This lack of communication leaves families emotionally devastated, wondering if their input could have made a difference in keeping their father, aunt or grandmother alive. Or at the very least, allowing for a peaceful death instead of suffering. It’s traumatizing.
Legal advocate Jane Meadus says lack of communication is one of the biggest problems in long-term care, where many doctors and staff “operate on the premise that they know best.” A lawyer for the Advocacy Centre for the Elderly, Meadus says “families can’t understand why the home isn’t calling if there’s a fall or a bad illness. It ends with people being very upset.” She’s right about that.
Ageism probably plays a role too. Meadus says some staff, believing that since residents are old and sick and they are going to die, may be less attentive than they ought to be.
To be fair, some Ontario homes are working hard to improve connections with residents and families. A few strong leaders are creating a culture where greater attention is paid both to residents and their relatives. To state the obvious, that creates a more positive experience for everyone.
If Rieser wasn’t able to advocate for his wife at the end of her life, his lawsuit could serve the dual purpose of holding the home accountable and exposing an important matter of public interest. After all, the elderly are among our most vulnerable citizens. As Meadus points out, society wouldn’t allow daycare teachers to ignore parents’ input with young children.
Communication matters, whether the individual is in a care home or still living in the community. The Ontario government has been pushing an aging-at-home strategy for people with dementia, which is welcomed by David Harvey, chief public policy and research officer for the Alzheimer Society of Ontario.
Community care needs improvement, too. The current homecare system is rigid, Harvey says. Health-care workers arrive at a home with a “list of things that I do and don’t do.” Creating a system that responds to individual needs could make life in the community easier for the elderly — and their caregivers.
Making the needed adjustments for an aging population goes beyond Queen’s Park. Despite years of lobbying, Canada still needs a national dementia strategy. But, groups like the Alzheimer Society of Canada say momentum may be shifting.
A federal private member’s bill pushing for a strategy is up for third reading. And last fall, the Senate Committee on Social Affairs, Science and Technology called for a national strategy so all Canadians have access to good care and choice in where they receive it.
After years of focus on clinical outcomes for the elderly, there’s a growing awareness that if life can be extended, it must also be worth living. Programs, whether in the community or long-term care, must adapt and allow residents what Harvey calls the “dignity of taking risks.” Unfortunately, these innovative ideas remain the exception. That’s why provincial and federal decision-makers must listen to people like Fred Rieser, whose lost opportunity to advocate for his wife has exposed the need to talk about change. Communication is good. And it’s long overdue.
The province and the College of Physicians and Surgeons of Ontario must do a better job of holding incommunicative medical staff to account