Access - Overview

Investigators:

Grace Johnston, MHSA, PhD.
Maria Cristina Barroetavena, MD, PhD.

Universal access to high quality palliative care is a priority area for Canada's National and Provincial governments¹, however, few Canadians receive hospice palliative care services specializing in end-of-life care².  The following actions have been identified by the government to improve end-of-life care:

        1. Define reporting requirements to ensure accurate reporting of utilization and cost information.
        2. Develop accountability mechanisms including appropriate outcome measures and performance indicators.
        3. Address data and information needs to support evidence-based decision-making, service development, and system accountability.

Currently, there is very little population based evidence on: 1) the role that acute care hospitals play at the end of life cancer care, 2) associated costs, and 3) predictors of hospital use. Despite recognition as a critical indicator of end-of-life care, ethnicity has not been incorporated in Canadian linked-database end-of-life studies, thus hampering an accurate assessment of the role of culture on health practices, service utilization, and morbidity and mortality outcomes.

Investigators Dr. Grace Johnson and Dr. Maria Cristina Barroetavena lead the NETs research in Access to care in both BC and Saskatchewan. 

1. Health Canada, 2002; CSCC, 2002
2. BC Ministry of Health, 2002; NS Department of Health, 1994; Health Canada, 2000

Purpose:

• To determine pattern and trends in place of death from 1997 to 2003 for adult British Columbians and Nova Scotians who died of cancer

• To identify factors predictive of dying out of hospital.

Results:
Patients who died out of hospital were more likely to be:

• female
• over 45 years of age,
• from a neighbourhood in the upper income range
• lived outside the Fraser and Vancouver Coastal Health Authorities
• survived longer than 60 days after diagnosis

Residence - rural or urban - did not contribute to the place of death.

Comments:
More research is warranted to explore the socio-cultural variables on health services utilization at the end of life. 

• Determine place of death for adults dying of cancer in Nova Scotia from 1994-2003
• Identify patient and health service predictors of dying out of hospital 
•  Develop new study variables from existing provincial health administrative databases:
  • Systemic therapy at end-of-life
  • Nursing home residence
  • Culture
  • Registration in the Cape Breton Palliative Care Program
• Assess data quality of study variables

Results:
Patients who died out of hospital were more likely to:

• Be female
• Be over the age of 75 years
• Be from an area with a median income in the upper quintile
• Have survived for 61 days or longer after diagnosis with cancer
• Have died from breast or colorectal cancer

In both Halifax and Cape Breton regions, patients who died out of hospital were more likely to: 

    • Have been registered in a palliative care program

Among patients registered in a palliative care program, those who died out of hospital were more likely to: 

    • Have been registered in the palliative care program for 17 or more days prior to death

Patients who died out of hospital were less likely to: 

    • Be from Cape Breton County or another non-Halifax County 
    • Be from a rural area 
    • Have received palliative radiation in the last 9 months of life

Distance from a cancer center, medical oncology consultation in the last 12 months of life and all ecological cultures variables other than income were not independently associated with place of death.

Comments:
By studying trends in the provision of care at end-of-life we can assess whether the needs of those dying with cancer are being met and whether the trends in care are affecting the ability of cancer patients to die in a setting of their choice.

With continuous improvement of data quality and development of the end-of-life database, care at end-of-life can be investigated and improved.

• Determine cultural predictors of accessing palliative care program service for adults at EOL with cancer in two counties in NS: Halifax and Cape Breton
• Test the use of data quality assessment framework for assessing palliative care program data
  

Results:
Patients who were enrolled in a palliative care program were more likely to:

• Be female
• Be younger (<65 years of age)
• Be from Cape Breton County
• Have survived for more than 2 months after cancer diagnosis
• Have received radiation therapy in the last 9 months of life
• Have received chemotherapy in the last 9 months of life
• Have died out of hospital
• Have not lived in a nursing home at time of death
• Have died of a gastrointestinal cancer

Comments:
Our analyses have enabled us to examine access to palliative care service by persons dying of cancer. Health system, socio-demographic, enabling resources, indicators of need, and oncology treatment all appear to influence palliative care enrollment. However, definitions and terminology must be fully understood for meaningful comparisons among palliative care programs to occur.