Diagnosed with a recurrence of cancer and told there were few treatment options, Myles Schopf decided he preferred to die at his home in Edmonton, Alberta. But despite the care of his partner, Richard Horth, and a palliative homecare nurse, Schopf needed more support in his final hours.
“The worst started in the middle of the night,” Horth remembers. “I remember this sound. I turned the light on and realized that it was the sound of his breathing.” After being called to the home to assess Schopf, the homecare nurse called 911 and triggered a visit from an Emergency Medical Services team.
The paramedics arrived at the home without sirens or lights, ready to work with homecare and an on-call physician as part of an innovative “Assess, Treat and Refer” program being implemented by Alberta Health Services, where paramedics can now provide symptom management in the patient’s home.
“I still remember when they came through the door, they were just so respectful,” Richard says. “It was an absolutely gigantic difference, just from the perspective of going to the hospital. Because it’s a one-way trip. When you’re in the situation that we were, that it had been clearly decided that Myles wanted to be at home, a program like this is just invaluable.”
A 2013 study from Saint Elizabeth found that 51 per cent of Canadians would prefer to receive end-of-life care at home. Yet Statistics Canada reports that almost 70 per cent of Canadian deaths occur in a hospital.
In Alberta, paramedics work in tandem with homecare and on-call physicians to stabilize and treat palliative patients in the community.
In Nova Scotia and PEI, a similar program is being implemented with funding from the Canadian Partnership Against Cancer, which acts as the steward of Canada’s national cancer control strategy and aims to improve the journey of those affected by cancer. The Partnership is considering ways to spread and scale up the project with other provinces and will host a two day event later this year to share findings and successes.
Paramedics were already going to these types of calls, but protocols and certain political, legislative or system-level barriers stood in the way of their providing on-site care, said Dr. Alix Carter, an emergency physician at the Queen Elizabeth II Hospital in Halifax and the medical director of the Emergency Health Services research program, who co-leads the program with Marianne Arab, Supportive Care Manager with Cancer Care Nova Scotia.
“This (program) uses the skills and tools that paramedics already have in a different way, with the goal of keeping people where they want to be,” Dr. Carter said.
To a layperson, it may seem intuitive to expand paramedic skills in this direction, but Dr. Carter notes that, historically, emergency medical services have been seen as a mode of transport, with an emphasis on car crashes, heart attacks and other time sensitive, high-risk emergencies.
But times have changed: paramedics are highly skilled medical professionals who respond to a vast array of calls, many of them around worsening chronic conditions.
Katherine Houde, a paramedic in Halifax who has been responding to emergency calls for more than 19 years, said the program has allowed paramedics to offer help where they once felt their only option was to load up a patient and transfer them to hospital.
“It’s a different way of thinking about a patient,” she said. “We’re used to working in chaotic environments where the approach is go in, take care of the patient and get out. This requires us to slow down, to think about a long-term treatment plan and to think of the patient as more than a single condition we’re caring for in the moment.”
After more than four years of preparation, 1,000 paramedics in Nova Scotia and 200 paramedics in PEI have been trained to provide palliative support at home. In Alberta, all 4,500 EMS staff are currently trained to provide collaborative support to homecare clinicians caring for palliative patients.
Both programs embed paramedics in the care team, working in concert with physicians and others to ensure situations like an emerging pain crisis have a more long-term solution. “Otherwise, when this dose of medication wears off, you’re back where you started,” Dr. Carter said. Paramedics can bridge the gap until the rest of the health care team can get involved.
Symptoms most commonly associated with palliative patients can include breathlessness, pain, nausea and anxiety.
While some physicians can leave standing orders for certain types of medication or interventions – such as oxygen support – patients can still experience crises, take unexpected turns, or find themselves needing medications that are not always available at the local pharmacy or in the middle of the night.
That’s been the reality for Danika Kiziak, a nurse in Cold Lake, Alberta – a city of 15,000 about three hours northeast of Edmonton – who has activated the “Assess, Treat and Refer” program on a few occasions.
“It’s very comforting to know that there’s help there. If we have palliative calls at 1 a.m., for example, it offers so much comfort and support for us and for the family. It broadens our ability to support patients in their home,” Kiziak said.
“As much as you’re prepared, when you’re in those stressful moments, it can mean so much to know you have someone to come in and help you with those decisions,” said Cabri Miller-Nielsen, a registered nurse who also covers Cold Lake, Alberta. “We find every palliative patient is a totally different situation; you can’t necessarily plan for what’s going to happen. It’s nice that we have the option to reassess and people there to support us.”
Keeping palliative patients at home has benefits not only for the patient and their family. As Kiziak notes, in a city like Cold Lake, treating palliative patients in hospital would take up nearly all of the local hospital’s acute care beds.
Transporting a palliative patient to hospital can be physically distressing to a patient, and may only result in their waiting for a bed and treatment.
“We know that if a palliative patient is transported to hospital for symptom management, although they’re quite ill and would rank high on the intake triage scale, lots of times they experience significant delays at the emergency department,” said Cheryl Cameron, the lead for Alberta’s Palliative and End of Life Care Assess, Treat and Refer program.
“More importantly, it can be a terrible experience for patients and their family to be gathered around an ambulance stretcher in the emergency department. If they can be at home, in their community, if there’s something we can do to support that, it’s a better experience for those patients,” Cameron said.
“Right to Care: Palliative Care for all Canadians,” a 2016 Canadian Cancer Society report, shows that the costs of palliative care during the last month of life can be $1,100 a day in an acute care unit as opposed to $770 a day in a palliative care unit and under $100 a day in the home.
Since better care was the primary motivator for implementing the programs, they are being evaluated to determine how paramedics, families and patients respond to it, how many patients were able to die according to their wishes, and how many patients were diverted away from hospital emergency departments.
“The health system in general is also recognizing that going to the hospital is not always the right answer and may not be either the place where the person wants to be or the place where they’ll get the right care. It’s not sustainable from a system perspective either,” Dr. Carter said.
For families, it’s another way to ensure that they’re able to meet the last wishes of a loved one.
“Palliative care is the wave of the future,” Horth said. “Just like everybody died at home 100 years ago, I think now we’re getting back to our roots. The thing I would tell people is it could make the difference in you staying at home. You get, as I did, an amazing sense of comfort to know that they’re really fighting for you. They’re really fighting to make a difference, to make your wish come true, to keep you at home.”