BOX 2-1 Questions to Assess and Monitor How Well Individuals’ End-of-Life Needs Are Being Met

  • Where are people dying and how much of the end of their lives is spent in those settings?

  • Who is providing care for them as they die? Do institutional settings support family presence at the end of life?

  • Are physical and psychological symptoms being identified and treated (including but not limited to pain)?

  • How many persons experience impaired cognitive function before death, to what degree, and for what period of time?

  • How many persons experience physical disability or social isolation before death, to what degree, and for what period of time?

  • How do patients and loved ones perceive their quality of life at various time points prior to death?

  • Are patients and loved ones achieving a sense of life closure?

  • Are patients and loved ones involved in decision making about treatment and care options?

  • Do dying persons have adequate access to supportive end-of-life care?

  • What forms of health care delivery are most helpful in promoting end-of-life care goals?

  • Are patients and loved ones able to make informed decisions based on timely and adequate information about what to expect, treatment options, services, and resources?

  • Are patients and loved ones receiving supportive services from chaplains, therapists, health aides, and other providers?

  • Are family physical, emotional, and financial resources being heavily depleted by the care of a dying family member? Are burdens spread across many or borne by a few?

  • Are loved ones supported through the grieving process?

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