The information presented is from the Quality Palliative Care in Long Term Care Alliance (QPC-LTC) funded by the Social Sciences and Humanities Research Council (SSHRC). This five year research study focuses on the need to develop formal palliative care programs in LTC care homes. The Alliance is comprised of 31 researchers and 43 organizational partners who actively contribute their expertise. Knowledge Translation activities for this project are funded through the Canadian Institutes for Health Research (CIHR). Dr. Mary Lou Kelley is the Principal Investigator for this project. For more information regarding this research please visit their website www.palliativealliance.ca
Introduction
Palliative care is a philosophy and a specialized approach to care that encompasses the physical, emotional, social, psychological, spiritual and financial needs of residents living in long term care homes and their families. Fundamentally, Palliative Care aims to enhance quality of life for residents who are experiencing progressive and life limiting chronic or terminal illnesses.
While LTC homes have become a major location of death in Canada, most do not have formalized Palliative Care programs. Last year 50% of the residents who lived in one of the Ontario LTC homes participating in our research died, that is, approximately four deaths per month in a home with 110 residents. This demonstrates that without a doubt LTC homes are in the “business of dying.” The majority of residents who die in LTC have Alzheimer’s disease or related dementias in conjunction with other chronic and terminal illnesses. The new LTC Act in Ontario has recognized this new reality by mandating the provision of palliative care education for all staff providing direct care to residents in LTC homes.
Applying a Community Capacity Development Model to Inform Palliative Care Programming
A community capacity development model is being used as a theory of change to develop PC programs. The four phase model, depicted in the figure below as a growing tree, illustrates a bottom-up & sequential change process. Phase 1, Having Antecedent Conditions, identifies four conditions underpinning organizational change that must be assessed and strengthened to achieve sustainable progress through the subsequent phases of PC program development.
Phase 1: Having the antecedent conditions within the LTC home
In the model at the roots of the tree, four antecedent conditions form the basis for future palliative care development. An assessment of these conditions thus began the change process & included assessing the state of:
- health care infrastructure in the LTC home;
- collaborative team approaches to care;
- vision to improve care of dying people;
- and sense of empowerment amongst staff to influence organizational change.
Project Outcomes: The environmental assessment identified the following barriers in the LTC homes: staff lacked knowledge of PC and access to PC education ; there was no comprehensive resident PC assessment and no systematic process to identify residents approaching end-of-life; the LTC home lacked policies and procedures relating to PC; communication problems existed amongst staff, residents, and families regarding PC issues.
Phase 2: Experiencing a Catalyst for Change within a LTC home
In phase 2 of the model, a catalyst for change occurs within a LTC home when a person or an event disrupts their current approach to caring for dying people.
Project Outcomes: The QPC-LTC Alliance was the catalyst to create change within the four participating LTC homes. The change process was facilitated by a new LTC home act that required PC programs and by personal support workers within each home who were champions for change.
Phase 3: Creating the Palliative Care Team within a LTC home
In creating the team, providers join together in order to collectively improve care of the dying & develop PC programs. The team requires dedicated people of all disciplines and getting the “key” LTC staff and managers involved.
Project Outcomes: An interdisciplinary Palliative Care Resource Team was developed using a full day planning retreat and a series of meetings to engage the staff. The focus was on engaging direct care workers.
Phase 4: Growing the Program within a LTC home
In this phase, a PC team continues to build, but now is ready to deliver palliative care. Ongoing tasks include: strengthening the team; engaging LTC staff of all disciplines; engaging community PC experts and resources; sustaining new palliative care practices.
Project Outcomes: The four LTC homes are now creating their own palliative care programs, policies and procedures while engaging staff, residents and families. Through research and a staff led quality improvement process, some examples of new interventions developed to support PC programs include:
Enhancing Clinical Care – Creating opportunities for staff to improve clinical skills through working in a Simulation Lab; visiting a speciality Hospice Palliative Care Unit, and; by participating in “Comfort Care Rounds” where residents’ care plans were reviewed with a PC consultant.
Enhancing Education - A 6-module (12 hr.) PC education course was offered for direct care workers; a Snoezelen therapy toolkit was created and staff, family and volunteers were engaged to use the resource; “book chats” focusing on understanding dementia were initiated with front line staff.
Advocating for PC –Based on the research, a brief was presented to the Canadian Federal Parliamentary Committee on Palliative & Compassionate Care to advocate for resources & policy to enable the provision of PC in LTC.
Building External Linkages – Hospice volunteers & divinity students were engaged to work in the TC homes to support staff in provision of social & spiritual care.
For more information regarding this model or the Quality Palliative Care in Long Term Care Alliance project please visit our website www.palliativealliance.ca