Photo: CHRISTOPHER KATSAROV/THE GLOBE AND MAIL
Susanna Mak knew her patients with heart failure needed more care than she could give them.
As a cardiovascular specialist, she had the ability to improve their survival and allow them to live longer, but there was still the unsolved problem of improving their quality of life. She was not equipped to help her patients with their chronic symptoms, including pain, depression, anxiety, fatigue and anorexia.
Their recurring episodes of pain and shortness of breath frequently brought them back to hospital, where, eventually, as their illness progressed, many died, despite their wishes to die in their own homes.
“I wondered myself whether there might be any other way of dealing with this,” said Dr. Mak, who is director of the Anna Prosserman Heart Function Clinic at Mount Sinai Hospital and director of cardiology at the University of Toronto’s department of medicine.
So, she sought help outside her field, and partnered with palliative care physician Leah Steinberg at Mount Sinai’s Temmy Latner Centre for Palliative Care. Together, building on the in-home palliative care that Dr. Steinberg’s center already provided, they came up with a collaborative at-home palliative care approach for heart-failure patients. Patients are looked after by a team of professionals, who can, depending on the individual patient’s needs, provide home visits and help manage their symptoms there, reducing the need for them to go to hospital.
That approach is now being used in other parts of the country and beyond, nearly a decade later. And its benefits are backed up by two recent studies.
“This does not require a wholesale hiring of an incredible number of new providers to be able to do this. It just requires a reorganization of how we deliver care,” said Toronto clinician-scientist Kieran Quinn, who co-authored both studies, published last month.
The first study, published in the CMAJ, showed heart failure patients who were treated with this collaborative approach tended to have fewer visits to the emergency department and shorter hospital stays and were less likely to die in hospital than patients given standard care. The second, published in the Journal of the American Heart Association, found the approach was able to support patients’ treatment preferences as they changed over time. In other words, patients could still benefit from the collaborative palliative care, even if they initially wanted to go to hospital for life-extending treatment.
As Dr. Steinberg, an assistant professor in the department of family and community medicine at the University of Toronto, explained, the role of palliative care is to provide pain- and symptom-management, as well as psychosocial support to the patient and family. Historically, palliative care started at the end of life when all efforts to prolong a patient’s life were exhausted. But that has changed over time, particularly for cancer patients, as it became apparent it was helpful to introduce palliative care earlier, while patients were still receiving active treatment, Dr. Steinberg said.
Yet, while that worked well for patients with cancer, the disease trajectory for heart failure is much less predictable, she said. Even though there is no cure and the mortality rates are high, the course of illness for heart-failure patients can resemble a roller coaster, where they may be extremely sick for weeks or months, but then get better again.
“You’ve got this up and down trajectory and any one of these depths where they’re very sick, that could be where their end of life occurs,” Dr. Steinberg said, explaining this unpredictability is why palliative care for these patients would often be given only in the last days or hours of life.
From Dr. Mak’s perspective, the high burden of symptoms that her patients experienced represented a large gap in care. Heart failure is the most rapidly growing disease among the country’s older population, she said, noting it’s estimated to affect up to a million Canadians, and is one of the most common causes of hospitalization and death.
With their collaborative approach, heart-failure patients receive care from a team that includes cardiologists, palliative-care physicians, nurses and home-care providers. Initial visits, which occur in clinic, hospital or at patients’ homes, involve discussions with a palliative-care physician to assess their symptoms and needs. These discussions, held over time, help create a treatment plan.
Depending on their needs, some patients are set up with medications to manage their pain, shortness of breath, nausea or lack of appetite. Home visits, with the support of a cardiologist, can provide intravenous diuretics, which patients would otherwise need to visit a hospital to receive. Some patients may require additional help from home-care providers for tasks, like bathing. A palliative-care specialist may also discuss advanced care planning, helping the patient and family prepare for the future. Meanwhile, the patient’s cardiologist remains involved.
The CMAJ study compared the location of death for 245 patients who received the home-based palliative care with a matched cohort who received standard care. It found 41 per cent of the former group died in hospital, compared with 78 per cent of those who received standard care. They also had lower health care use and spent more time at home.
In an accompanying editorial, CMAJ senior deputy editor Andreas Laupacis said the findings underscore the importance of scaling up access to high-quality home-based palliative care. He noted, however, one of the barriers to wider acceptance of this approach is the misconception that palliative care means minimalist care.
That misconception is a continued challenge, said Dr. Quinn of Sinai Health System, the lead author of the CMAJ study and an assistant professor at University of Toronto. Far from giving up on patients, palliative care is an “incredibly active form of treatment” that focuses on improving quality of life and reducing symptoms, he said.
This collaborative approach could be applied to other complex illnesses, like chronic obstructive pulmonary disease and dementia, and adapted beyond urban centres in regions where palliative care is less accessible, Dr. Quinn said.
“We have to break down these silos and we have to reimagine how we’re going to deliver care to older adults. This is one way that we can reimagine that care delivery to help everybody,” he said – patients, their caregivers and the health care system.