End-of-life care setting transitions in the last year of life Deepthi Mohankumar, PhD & Donna Wilson, RN, PhD Faculty of Nursing, University of Alberta With appreciation to other team members: Allison Williams, PhD Elizabeth Tanti, RN, MSN

Research need The body of research on location of death is growing rapidly, with the locations where dying persons receive care in the last year of life of prime interest for quality care, compassionate care, economic, and other considerations. Care type transitions that occur as a terminal illness proceeds are an established concern. The number of transfers that occur from one care setting to another over the last year of life is an emerging concern.

Background To date, a few studies have focused on the number of admissions or readmissions to hospital near the end of life or in old age. However, it is now possible to become ill, have many diagnostic tests, see many specialists, have one or more chemotherapy regimens, receive radiation, and die - without spending one night in hospital. Transitions occur now between hospitals, ERs, one or more homes, various day surgery and other ambulatory care clinics, nursing homes, hospices, sub-acute care, rehab facilities, etc.

Phase 1: Quantitative study Rural people are more vulnerable as local healthcare services may be minimal and specialist care is centralized in cities. Albertans are 80% urban and 20% rural. Purpose – Compare last-year transitions between rural and urban Albertans Data- Two most recent years of provincial inpatient hospital and ambulatory care data (April 2005 through March 2008)

Sample and study characteristics Total N = 3,216,624 Albertans in 2007 Total deaths in province in 2007 = 19,398 “Missing” decedents = 16,000 (8.2%), these persons did not visit hospitals or ambulatory care clinics in last year of life Rural decedents = 3,239 (16.7%) Urban decedents = 14,559 (75.1%) 10,008 Males (51.6%) and 9,390 Females

Results : Rural-Urban differences RuralUrban Care setting transitions 4.2*3.4 In patient discharges 2.1*1.7 Total stay (days) Alternate care (days) * Procedures2.6*2.4 Inpatient days – most responsible diagnosis

Age differences Below 65 (N= 3484)Above 65 (N= 10385) Care setting transitions 3.9*3.4 In patient discharges 1.6*1.6 Total stay (days) * Alternate care (days) * Procedures3.6*2.0 Inpatient days due to most responsible diagnosis *

Differences with those who lived LivedDied Care setting transitions * In patient hospital discharges.091.6* Total stay * Inpatient days due to most responsible diagnosis *

Location of death Acute CareAmbulatory Care Total87.4%12.6% Younger than %21.8% Older than %9.0% Rural84.1%15.9% Urban88.2%11.8%

Phase 2: Online survey Rural respondents or respondents about rural persons who died recently (N=108) reported: - 8 care setting transitions occurred in the last year of life on average (range of 1-39). - transitions were mainly from home to/from hospital, but also between many other places. - transitions were very difficult; involving travel at all times of day and year, long/difficult/costly journeys, much care uncertainty/discontinuity, and considerable anxiety for all involved.

Phase 3: Qualitative interviews Eleven interviews were conducted until saturation occurred (family members mainly) Data coded and categorized, for 3 themes: 1. Needed care is scattered across many places. 2. Travelling is very difficult for terminally-ill or dying persons and all others involved. 3. Local rural services are minimal, in keeping with the fact that few persons live and die annually in each rural area; local hospitals and medical clinics are extensively relied upon.

Issues or questions to consider What are the implications of a higher number of transitions for rural residents? What can be done to assist rural persons who need to travel more to access care that is now across a wide spectrum of care settings? What can be done to reduce the number of transitions for rural people and perhaps also urban people in last year of life?

Final thoughts Rural residents are a distinct, highly vulnerable group when terminally-ill, and for many reasons. Frequent care setting transitions are a common reality, with attention needing to be directed at: - earlier recognition of dying processes, - practical transportation options in rural areas, and - enhanced rural end-of-life care services such as hospices and palliative home care. Thank you.

Disclaimer Alberta Health and Wellness, and the Government of Alberta, are not responsible for this study and have no comment on it. Acknowledgements This study was funded by a Canadian Institute for Health Research (CIHR) Interdisciplinary Capacity Enhancement (ICE) grant, # HOA , entitled “Timely Access and Seamless Transitions in Rural Palliative/End-of-life Care” and funded through the CIHR’s Institutes of Cancer and of Health Services and Policy. This five-year program of research was awarded to A. Williams and D. Wilson (Co-Principal Investigators. Contact Dr. Donna Wilson Dr. Deepthi Mohankumar