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Why the Concern About Care at the End of Life?

Research data from end-of-life projects around the country tell us:

• Too many people spend their last days experiencing unnecessary pain.
• Too often, there is ambiguity about the patient’s wishes regarding when to switch from aggressive treatment to palliative care.
• One half or more of patients or their families report that physicians did not keep patients and family members informed and involved in decision making.
• Only about one third of the population have done advance care planning and prepared documents defining their wishes and designating a person to make health care decisions. And half the time such documents are not available when needed or are not heeded.
• Over 80% of respondents would like to die at home or in a hospice; only about 20% do so.
• In a Rhode Island survey of faith group members involved in end-of-life situations, only one-third said their place of worship does a good job of providing spiritual/religious counseling during illness and death.

To alleviate the concerns about end of life described above, the Partnership has developed tools for patients, their families, and health care providers. These toolsOur guide us in having a conversation with loved ones and health care providers about how we would want to be treated in case of serious illness if we could not commmunicate.

As a result of the 2004 SODIUM study, which the Better Ending Partnership sponsored, we have expanded upon our goal of community education to actively engage health care providers and long-term care facilitieshealth care institutions in addressing end-of-life care issues, and encouraging hospice and palliative care. Based on the outcomes of the SODIUM study, our current long-term goals include improving access, quality and competency in the provision of end of life care in Central Massachusetts.