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.
References:
1 Zhang B, Nilsson ME, Prigerson HG. Factors important to patients’ quality of life at the end of life. Arch Intern Med 2012;172:1133–42. doi:10.1001/archinternmed.2012.2364
2 Tanuseputro P, Wodchis WP, Fowler R, et al. The health care cost of dying: a population-based retrospective cohort study of the last year of life in Ontario, Canada. PLoS ONE 2015;10:e0121759. doi:10.1371/journal.pone.0121759
3 Lang JJ, Alam S, Cahill LE, et al. Global Burden of Disease Study trends for Canada from 1990 to 2016. CMAJ 2018;190:E1296–304. doi:10.1503/cmaj.180698
4 Alla F, Briançon S, Guillemin F, et al. Self-rating of quality of life provides additional prognostic information in heart failure. Insights into the EPICAL study. Eur J Heart Fail 2002;4:337–43.
5 Bahadori K, Fitzgerald JM. Risk factors of hospitalization and readmission of patients with COPD exacerbation–systematic review. Int J Chron Obstruct Pulmon Dis 2007;2:241–51.
6 Kavalieratos D, Corbelli J, Zhang D, et al. Association Between Palliative Care and Patient and Caregiver Outcomes: A Systematic Review and Meta-analysis. JAMA 2016;316:2104–14. doi:10.1001/jama.2016.16840
7 Courtright KR, Cassel JB, Halpern SD. A Research Agenda for High-Value Palliative Care. Ann Intern Med 2018;168:71–2. doi:10.7326/M17-2164
8 McIlvennan CK, Allen LA. Palliative care in patients with heart failure. BMJ 2016;353:i1010.
9 Steinhauser KE, Arnold RM, Olsen MK, et al. Comparing three life-limiting diseases: does diagnosis matter or is sick, sick? J Pain Symptom Manage 2011;42:331–41. doi:10.1016/j.jpainsymman.2010.11.006
10 Lunney JR, Lynn J, Foley DJ, et al. Patterns of functional decline at the end of life. JAMA 2003;289:2387–92. doi:10.1001/jama.289.18.2387
11 Seow H, O’Leary E, Perez R, et al. Access to palliative care by disease trajectory: a population-based cohort of Ontario decedents. BMJ Open 2018;8:e021147. doi:10.1136/bmjopen-2017-021147
12 Murray SA, Kendall M, Boyd K, et al. Illness trajectories and palliative care. BMJ 2005;330:1007–11. doi:10.1136/bmj.330.7498.1007
13 Gill TM, Gahbauer EA, Han L, et al. Trajectories of disability in the last year of life. N Engl J Med 2010;362:1173–80. doi:10.1056/NEJMoa0909087
14 Heyland DK, Dodek P, Rocker G, et al. What matters most in end-of-life care: perceptions of seriously ill patients and their family members. Canadian Medical Association Journal 2006;174:627–33. doi:10.1503/cmaj.050626
15 Hargraves IG, Montori VM. Aligning Care With Patient Values and Priorities. JAMA Intern Med Published Online First: 7 October 2019. doi:10.1001/jamainternmed.2019.4230
16 Tinetti ME, Naik AD, Dodson JA. Moving From Disease-Centered to Patient Goals-Directed Care for Patients With Multiple Chronic Conditions: Patient Value-Based Care. JAMA Cardiol 2016;1:9–10. doi:10.1001/jamacardio.2015.0248