Community Engagement and Education

Most people's needs and desires in the face of very serious illness can be summed up in three words: comfort, companionship, and control. Comfort means that pain and other distressing physical or psychological symptoms are managed with skill and compassion. Companionship means that critically ill and dying people, and their families, are never abandoned by their care givers or forced to bear their suffering silently and alone; rather, the last phase of life should be a time for strengthening relationships and finding meaning. Control means one's choices for treatments and settings for receiving care are respected and that choices are based on open, honest, and clear communication between providers and patients throughout the course of the patient's illness.

Unfortunately, we are still far from the day when these needs and desires are consistently met in our health care system both because of the system's orientation toward cure at any cost and our contemporary culture's removal from and subsequent discomfort with the reality of dying and death. Far too often, seriously ill patients suffer from inadequate pain and symptom control, lack of communication about their illness and options for treatment, and poor psychosocial and spiritual support. The Institute works to enhance public awareness of the need to improve services for the seriously ill and dying across the continuum of care in all communities. Building public demand and then bridging the gap between legitimate public demands and everyday reality will require broad-based community activism.

Not so long ago, women fought a similar battle to make the beginning of life a more natural, comfortable, and personal experience. Today when women approach childbirth, they expect they will have choices of settings, approaches to pain control, and the presence and participation of their partners. The time has come for a similar transformation in care for those with incurable illness and at the end of life. Because so many patients and families who receive palliative care tell us they wished they had known about these services sooner, the Institute is playing a leading role in reaching out to the public with information about palliative care.

Past Accomplishments

• Introduction to Compassionate Care for the Dying is a six-week course that the Institute offers to provide people from the community with basic information about the physical , psychological, and spiritual aspects of the dying process in order to help strengthen their ability to be supportive and present with those who are dying and bereaved. (Previously supported by Ladies Hospital Aid Society)

Current Programs & Initiatives

Institute staff and faculty are active members of the following:

• Pennsylvania Governor Rendell's State Task Force on Quality at the End of Life: In January 2005, Governor Rendell responded to a poor performance rating for the state in a national report commissioned by the Robert Woods Johnson Foundation by appointing a statewide Task Force for Quality at the End of Life. The Task Force was asked to recommend improvements in Pennsylvania's capacity to maintain quality of life of people with serious or advanced illnesses and improve the state's performance on a number of benchmarks for quality end-of-life services. The State Task Force Report recommends strategies for addressing the needs of people with serious or advanced illnesses, and those who care for them, which have a significant impact on their quality of life. This report is intended to accomplish the following:
  
  • Create momentum for change at a policy, systems, and grass roots level.
  • Mobilize stakeholders for action by providing information and pathways toward reform.
  • Energize local citizen action groups, and provide them with information and motivation to organize and demand change.

  The Pennsylvania Task Force for Quality at the End of Life released its report Improving End-of-life Experiences for Pennsylvanians to Governor Rendell on February 5, 2007:
  Links to the Report and Publicity

• The Coalition for Quality at the End of Life (CQEL) is a coalition of health system leaders, provider organizations, insurers, citizen groups, governmental agencies, philanthropic organizations, clergy, and others who are concerned about the quality of care that is available to critically ill and dying people and their families in Western Pennsylvania.
  
  CQEL's mission is to improve end-of-life care in the region by identifying and collaborating with the key stakeholder groups. CQEL works to achieve its mission by engaging the community to build demand for better end-of-life care, strengthening capacity among local health care institutions for the delivery of skilled and compassionate care, focusing attention on the regulatory and financial barriers to quality end-of-life care, and promulgating appropriate standards and measures.


• Leadership Council on Long-Term Care: In an effort to improve the quality of palliative and end-of-life care services in the long-term care setting, a consortium of Western Pennsylvania nursing facilities and the Institute to Enhance Palliative Care have joined together in an initiative called the Leadership Council on Long-Term Care.