Kieran Quinn: We need to raise awareness of the benefits of palliative care services for patients with terminal non cancer illness

The road to death for patients with serious illness is often a rocky one, marked by dramatic and unpredictable exacerbations and can result in potentially avoidable emergency department visits and hospitalizations. [1] Frequent use of the healthcare system is also associated with significant symptom burden, disability, and a lower quality of life.[2-5] 

Palliative care is primarily focused on improving quality of life and relieving burdensome symptoms in all patients with terminal conditions, including those with cancer and non-cancer illness. In the age of rising healthcare costs, some have questioned whether the primary benefits of palliative care can also translate into collateral reductions in healthcare use and its associated costs. [6,7]

The bulk of current evidence demonstrating the benefits of palliative care is predominantly found in studies of patients with cancer. [6] Yet there are twice as many patients with noncancer illness and palliative needs than there are for those with cancer. [8] While patients with noncancer illness share many of the same palliative needs as patients with cancer (such as pain and shortness of breath), they also have worse functional impairment and higher levels of anxiety and depression.[9] There is therefore an urgent need for high-quality studies that evaluate the ability of palliative care to relieve the high burden of suffering and healthcare use in patients with noncancer illness who have a very different trajectory of dying.[10-13] 

Our population-based study of 113,540 adults in Ontario, Canada who died from cancer and noncancer illness, now published in The BMJ, found that palliative care was associated with one less emergency department visit for every 11 patients, one less hospitalization for every four patients and one less intensive care unit admission for every patient dying of chronic organ failure (e.g. heart failure and chronic obstructive pulmonary disease) who received it. These findings were similar to those who were dying from cancer. We were surprised to find an increased rate of healthcare use associated with palliative care in those dying from dementia, a finding that will require further study to explain.

The impetus for our study was inspired by my experiences caring for patients with noncancer illness such as heart failure, chronic obstructive pulmonary disease and dementia. Many of my patients had no meaningful quality of life as a result of their progressive disease—a sentiment shared with them by their families and caregivers. Yet they continued to arrive in our emergency department and were frequently readmitted to hospital. I was bothered by the idea that my patients didn’t want this type of care, but were unaware of other services, such as palliative care, that could help them avoid having to come back to hospital. Lack of awareness of the availability of palliative care or its benefits was not the fault of these patients or their healthcare providers. After all, many palliative care programmes were established in cancer centres to care for patients with cancer. But when I referred these patients to our palliative care teams who were well equipped to provide care for them at home and prevent unwanted transfers to the emergency department, I wondered, if palliative care can do it here, can they do it across an entire healthcare system? 

As the evidence base for the benefits of palliative care expands, the next challenge facing healthcare systems is how to organize and disseminate sustainable care that aligns with the individual preferences of our patients, a goal set by the Institute for Healthcare Improvement in the United States.[14] To meet these enormous challenges, we need sustained investment in healthcare provider training and the scaling of existing effective models of collaborative palliative care, as well as research to evaluate its effectiveness.[15,16] Working at the bedside has taught me to ask these questions, and these are the ones that now need answering.

Kieran Quinn, General Internal Medicine and Palliative Care, Sinai Health System and PhD Candidate, Clinical Epidemiology & Health Care Research, Institute of Health Policy, Management and Evaluation, Eliot Phillipson Clinician-Scientist Training Program, University of Toronto. 

Twitter: @kieranlquinn

Competing interests: Please see research paper.


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