An Ontario woman who has outlived her stage four lung cancer prognosis was asked last Thursday to leave the hospital to free up space, leaving her family scrambling to find accommodations, the woman’s grandchildren say.
For months, Miranda Newman and her brother, Adam Luciano, who are joint power of attorneys, have navigated the labyrinthine hospital system as they care for their grandmother, 77-year-old Kathy Luciano. Admitted to a GTA-based hospital following a heart attack in July, Luciano was diagnosed with stage 4 metastatic lung cancer in August, along with pericardial effusion and fluid in her lungs.
Luciano was not considered strong enough to receive immunotherapy for her cancer and, on the advice of social workers and patient care coordinators, was placed in palliative care. The family says they were told it was the only way she’d be eligible for hospice. In palliative, the doctors worked to manage her pain, rather than treat the cancer.
Newman says that the hospital, which isn’t being named at the family’s request over fears of possible repercussions to Luciano’s care, informed them last week that Luciano would need to leave the hospital by Monday or be charged $400 a day moving forward.
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The $400-a-day fee for care is a result of Bill 7, the More Beds Better Care Act, a regulatory amendment that went into effect last September, despite reluctance from some hospitals.
“The hospital community is very uncomfortable with this kind of adversarial position,” Anthony Dale, CEO of the Ontario Hospital Association, told The Canadian Press in April.
The legislation is aimed at freeing up hospital beds by requiring discharged patients to move to long-term care homes, but some exceptions apply, including obtaining the patient’s consent.
Newman says she was informed of the looming discharge by the hospital’s patient flow coordinator, who later agreed to wait until the family could meet with the patient flow care team on Monday. Newman said her brother also expressed how unsafe the discharge would be.
“He said if you’re discharging her Monday, there’s a lot we need to know. How much oxygen is she using per hour? What are her medications? Are they going to provide them? Do we need to look into prescriptions? And they couldn’t tell us,” she says. “They had no answers.”
Luciano requires help with feeding, showering and getting to and from the bathroom. She is on the wait-list for numerous hospices and the family says they’ve had little success co-ordinating with long-term care and assisted living due to wait lists or exorbitant costs.
Newman says their ordeal exposes systemic flaws in health care.
“We’re failing our people by focusing on easing hospital congestion over providing compassionate end-of-life care. And there is no middle ground for seniors who cannot afford assisted living but might not have the time to wait for long-term care or limited hospice beds,” she says.
According to the family, one solution allegedly proposed by the patient flow coordinator was to move Luciano to a motel.
“That really made me a little bit angry. I understand that they’re trying to come up with different solutions, but I just didn’t feel like that’s a good solution, in principle, or for my grandmother,” she says.
Both Newman and her brother are unable to host Luciano due to accessibility issues in their living situations. Newman’s one-bedroom apartment in Toronto is not wheelchair accessible, while the bathroom in her brother’s home is located on the second floor.
Communication gaps with the hospital have also been a problem. Last week, Newman said she spoke to a hospice where her grandmother had supposedly been wait-listed since September, only to learn the hospice never received her application from the patient flow coordinator or Luciano’s social worker.
Newman says she has since been in contact with hospices to provide updates on Luciano’s condition and to make sure they’ve received her applications.
“People are overworked and things are slipping through the cracks but unfortunately, we’re dealing with life and death here,” she says.
The Ontario Association of Social Workers declined to comment on this story when asked about the challenges patients face transitioning from hospital to hospice or long-term care.
Amid the struggle to find a solution for her grandmother, Newman says she contacted the patient relations department within the hospital. When she received no response, she wrote to the Patient Ombudsman who got in touch with the hospital. She has also written to the Ministry of Health and the Ministry of Long-Term Care.
On Monday, the family had another meeting with the hospital. Luciano’s oncologist informed the patient care flow team that she was concerned about the unsafe discharge and insisted she be moved back into her care following an uptick in symptoms, including trouble breathing and a swollen foot.
While Luciano has now been moved back to “Level 2” care, the family doesn’t have a clear idea of how long she may be able to remain in the hospital.
Newman says it has been an isolating experience and illustrative of larger systemic problems that need addressing.
A Toronto-based writer with a forthcoming memoir about living with borderline personality disorder, Newman came into the situation with her own experience navigating the hospital system but said she still felt unprepared for the challenges her grandmother has faced.
“Unfortunately, I think we’re one of many stories. I don’t think we’re unique in this,” she says. “I understand we want to keep beds free, but if we’re kicking people out without the support they need then we’re just hurting them.”
She says the experience has also highlighted the importance of patient advocates, noting disparities in care for those without one.
“We have encountered other people who are in hospital who don’t necessarily have somebody there advocating for them and there is a difference in the level of care they receive,” she says.
She describes her grandmother, a former travel agent, as the quintessential “fun grandma.”
When they were young, Luciano would take Newman and her brother on weekend outings to hotels around southern Ontario. As she and her brother grew up, they each lived with her at separate times.
“She’s not just a grandma to us. She’s a mom on some levels,” she says. “She was just a really understanding, lovely, chatty woman who was just the most wonderful grandmother to us. And as a result, it’s very important to my brother and I that we’re doing our best to provide the best care that she needs now since she took such good care of us when we were kids.”
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