Managing Continuity through Collaborative Care Plans: A Study of Palliative Care Patients

Key Implications for Decision Makers

Patients living with progressive and debilitating illnesses experience many difficulties getting quality care. The Palliative Care Integration Project examined ways to improve palliative care for cancer patients by implementing standardized assessment tools and collaborative care plans.

  • A multidisciplinary network for integration of care delivery can be created without a change in governance. Relationship-building across multiple health systems and on all levels demonstrates the importance of a team approach in developing effective ways to deliver care.
  • The way "palliative" is defined needs to be standardized, both among care providers and in administrative databases. Some people take palliative to mean "end of life," while others take it to mean "an incurable disease."
  • A project co-ordinator and clearly identified champions (physician and non-physician) that act as role-models, resource persons, and monitors at the various sites of care are essential to support system integration.
  • Change to clinical practice takes time and must include significant system support that is evident to frontline personnel. Over time there will be improved outcomes in patient care.
  • The standardized assessment tools, collaborative care plans, and symptom management guidelines provide a common "language" across the continuum of care. This study suggests that the collaborative care plans should be customized and made portable to meet a site's care delivery needs.
  • Documentation materials that support the assessment tools and collaborative care plans must be standardized and in place at the time of implementation. This ensures accurate, effective, and efficient communication.
  • Ongoing site-specific education programs should be designed to meet the healthcare professionals' and patients' needs.
  • Ongoing evaluation (for example, with chart audits and focus groups) should be part of the implementation process. Potential barriers to implementation are then avoided or managed in a timely fashion.
  • The value of the tools developed in this project is shown by the fact that the Kingston, Frontenac, Lennox and Addington Community Care Access Centre now requires contracted nursing care agencies to use these tools.
  • The Ontario Ministry of Health and Long-Term Care has provided funding to export this project to neighbouring regions.

Executive Summary

Context

As more Canadians live longer, many more will live with progressive and debilitating illnesses. Palliative patients will use almost every sector of healthcare during their illnesses: primary, acute, and home. Barriers to quality palliative care include the misunderstanding that palliative care begins when the disease becomes "terminal," limited co-ordination and integration of palliative care, and inappropriate entry to care across sectors.

The Palliative Care Integration Project, which took place in the Kingston, Frontenac, Lennox and Addington health region, addressed the issue of integrated and co-ordinated health service delivery for palliative cancer patients by implementing standardized assessment tools and developing evidence-based collaborative care plans.

Implications

  • A multidisciplinary network for integration of care delivery can be created without a change in governance. Relationship-building across multiple health systems and on all levels demonstrates the importance of a team approach in developing effective ways to deliver care.
  • The way "palliative" is defined needs to be standardized, both among care providers and in administrative databases. Some people take palliative to mean "end of life," while others take it to mean "an incurable disease."
  • A project co-ordinator and clearly identified champions (physician and non-physician) that act as role-models, resource persons, and monitors at the various sites of care are essential to support system integration.
  • Change to clinical practice takes time and must include significant system support that is evident to frontline personnel. Over time there will be improved outcomes in patient care.
  • The Kingston, Frontenac, Lennox and Addington Community Care Access Centre now requires contracted nursing care agencies to use these tools developed in this project.
  • The standardized assessment tools, collaborative care plans, and symptom management guidelines provide a common "language" across the continuum of care. This study suggests that the collaborative care plans should be customized and made portable to meet a site's care delivery needs.
  • Documentation materials that support the assessment tools and collaborative care plans must be standardized and in place at the time of implementation. This ensures accurate, effective, and efficient communication.
  • Ongoing site-specific education programs should be designed to meet the healthcare professionals' and patients' needs.

Ongoing evaluation (for example, with chart audits and focus groups) should be part of the implementation process. Potential barriers to implementation are then avoided or managed in a timely fashion.

Approach

The study gathered quantitative data through patient and caregiver questionnaires, surveys, chart audits, and administrative databases. Qualitative data were gathered through focus groups of frontline workers and managers that were held before the assessment tools and care plans were implemented and approximately one year after implementation.

Information and findings were presented to various local stakeholders, agencies, and professionals through newsletters, abstracts, oral and poster presentations, a web site, multimedia CDs, and other resource material.

Results

Due to the short follow-up period, only minimal changes were found. However, the Ontario Ministry of Health and Long-Term Care has provided funding to export the project to other regions, and the researchers feel significant changes will be seen in the long term.

Implementing collaborative care plans led to an overall increase in documentation of palliative symptoms, particularly pain; however, other symptoms were still not well-documented. There was a slight increase in the number of patients who had their desired place of death recorded, but the number of patients with a "do not resuscitate" order on their files did not change.

In terms of access to palliative care services, the study found a decrease in the number of referrals to a palliative care medicine program; however, much of this coincided with the 2003 SARS outbreak. Referral to bereavement counselling also decreased during the study.

Patients did not experience fewer symptoms (such as depression, pain, loss of appetite) over the course of the study. Nor did caregivers report that the patients they were caring for had fewer symptoms. Caregiver burden did not change. There were no changes in satisfaction with services, although patients and caregivers were generally satisfied to begin with.

Some limitations of the study include the varying definitions of "palliative;" a low participation rate due to the fact that many patients were too ill to participate in the study; a longer implementation time than anticipated; and the lack of common documentation among the study sites before the project began.