Care gaps contribute to undignified palliative deaths in emergency rooms

While caregivers agree that funding falls short, advance planning is key for end-of-life care

Palliative patients should not end up dying in a busy, noisy hospital emergency room, say caregivers.

And yet a 2016 Canadian Cancer Society report says that while palliative patients often want to die at home, about 45 per cent of all cancer deaths in Canada occur in hospitals — a substantial portion of them in the emergency or intensive-care departments.

In the Local Health Integration Network (LHIN) that includes Hamilton, it’s 40 per cent says Martina Rozsa, LHIN vice-president of home and community care.

The complex issue of accessing dignified, quality palliative care was highlighted last week when the April death of terminally-ill cancer patient Donna Jones in a busy Hamilton hospital emergency department was

brought up in the Ontario legislature.

Jones, 66, wanted to die at home, but when a home-care nurse visited that day, she advised Jones’ husband and family caregiver to call an ambulance to take her to the ER.

She was placed in St. Joseph’s hospital’s ER hallway and later died in an ER room shortly after being moved there.

“It is a failure that Donna died in the ER,” says Clare Freeman, executive director of the Dr. Bob Kemp Hospice. “Hospital emergency departments are not meant for palliative-care patients.

“If someone is palliative in the ER, they are not going to be the priority.”

It was even worse for Ron Gottlieb, also terminally ill, who went by ambulance to Juravinski on Oct. 27, according to his sisterin-law, Barbara Fanson. Gottlieb, 67, was moved around seven times in the ER before dying there on Oct. 31 — with only curtains separating him from other patients, she said.

The reasons for such failures are complex — funding shortfalls, gaps in home palliative-care supports, and the reluctance of the dying and their families to plan far enough in advance for end-of-life care.

Natalie Mehra, executive director of the Ontario Health Coalition, says if home palliative care is not working, hospitals should have the resources to give people dignified care so they don’t die in the ER.

Hamilton hospitals, she says, “have been so cut, so stretched that people are routinely treated in hallways on stretchers for days.”

Freeman also says access to palliative care is very complicated.

It starts with specialists connecting their terminally-ill patients with the LHIN’s home and community care, where a care co-ordinator assesses the patient’s needs and allots so many hours of nursing and personal support worker care.

When pain management is needed, the LHIN contracts that out to nursing agencies, like Bayshore or the VON.

“The issue is in the quality of nursing care,” Freeman says. “Because of nursing shortages, it’s not the same nurse coming each time, and because not all nurses are palliative-care nurses, they may miss things along the way.”

A Hamilton palliative-care outreach team of two doctors and several nurses tries to fill the gap with a LHIN referral for 120 such patients, but Freeman says the response time is an issue.

Dr. Anthony Kerigan of the Good Shepherd’s Emmanuel House hospice — and an outreach team member — says crises can happen that make home care no longer possible and that’s why hospitals need dedicated palliative-care beds.

Although palliative patients dying in the ER is a reflection of the overburdening of hospitals, the best way to avoid it is to have early referrals to care and more advance planning.

“Advance planning allows the caregivers to be more empowered to handle crisis — like who to call, what medications are available,” Kerigan says.

Of course there are palliative patients who do get the care they need in the setting they want.

Marion Williamson of Cayuga says the care her dying husband received at home was exemplary throughout his cancer illness. “We were helped through his final hours with the guidance of his nurse who was with us daily.”

Kerigan feels that round-theclock care at a hospice is the most dignified way to die.

A LHIN co-ordinator has to make a referral first, but that can take as long as six or seven days, which Freeman says is too long. The hospice must then do its own assessment to determine if the patient is suitable, which some say can mean people die while waiting to get a spot. Whatever care is decided on, a major challenge is people’s reluctance to do advance planning.

Says LHIN’s Martina Rozsa: “It is important to talk about a person’s palliative-care wishes early on ... and to have regular conversations in case those wishes change because of circumstances “such as an acute-pain crisis, caregiver distress or an abrupt change in health status.”