1. Collaborative on end of life care

2. Identification of needs

3. Outcome measurement

4. Understanding costs of delivering end of life care

Beginning in December 1997, the NH End of Life Project will establish a Collaborative of teams from agencies and communities across the state to examine and improve specific aspects of end-of-life care and share information with others addressing similar issues. The NH End of Life Project staff will provide resources and techniques for rapidly achieving real improvement. We will support teams' work through meetings and phone follow-up. Teams can bring together people from different orientations, or from different disciplines within an organization.

Topics may include: use of advance directives; pain management; support of at-home care givers; creating links between health care providers; and so on. Brochures are available on request.

(2) Identification of Needs

FOCUS GROUPS

For a more detailed discussion of focus group findings, with quotes from participants, click here.

Focus group participants were recruited by hospices throughout the state from December 1996 through April 1997. All participants had had a loved one die in New Hampshire in the past three years in either at home, or in a hospital or nursing home. One group consisted of individuals who were themselves seriously ill or dying.

Through the focus groups, we identified a wide spectrum of experience. Some participants described a tremendous amount of assistance from health care providers, and a relatively easy experience; others did not receive or were unaware of resources available to support them. Caregivers often suffered emotionally and physically while providing care for loved ones at home, or when the illness was prolonged. Those who had provided care for a loved one reported that assistance in providing that care was almost always needed. Many stated that having had the experience of caring for someone else, they would actively avoid burdening their own families with such a responsibility. In cases in which illness and disability were prolonged, the death of the loved one was very often a relief for everyone involved.

1. Communication & decision making are critical:
   • Patients and families want honest prognostication, clear information about what to expect, and advice from health care providers.
   • Decisions should be made by the individual, supported by family whenever possible, and guided by health care providers.
   • Individuals want to be able to have control over whether they continue to accept treatment and live, particularly when they find the quality of life unacceptable.

2. Several different kinds of support are needed, including:
   • assistance with care, especially technical training and back-up, as well as the actual provision of care
   • respite for care-givers
   • emotional support for the patient
   • emotional support for families

3. Families were distressed by loved one's suffering.

4. Access to timely assistance is crucial.

5. Serious illness and dying imposes significant financial burden on individuals and their families.

6. Support for grief and anger is needed, often for a long time following the death of a loved one.

REGIONAL COMMUNITY FORUMS

We conducted regional forums around the state to bring health care providers and community members together to begin a dialogue about end-of-life care. We shared what we learned from focus group patients and families, and encouraged hospices and communities to set their own agendas for improvement work. Forums held to date include:

• Southern Region: Merrimack 6/11/97, Keene 9/15/97
• Western Region: Hanover 6/18/97
• Seacoast Region: Portsmouth 9/17/97
• Northern Region: planned for early next spring

Six hospices worked with us beginning last winter to develop a set of measures to assess patient & family experiences in terms of symptoms (such as pain, shortness of breath, depression, anxiety and others), as well as social and spiritual concerns. The survey which this group developed required 15 to 30 minutes to administer.

A shorter survey will be developed in the fall of 1997. The survey will be primarily filled out by patients (with a health care provider assessment for patients who are not alert or who have language barriers). We will also create a brief family survey. Topics for measurement will be selected based on what we learned in the focus groups about patients' and families' needs. We hope to involve providers (including hospitals, nursing homes, and others) around the state in data collection and ultimately we hope to have this brief survey administered by all hospices across the state simultaneously at least once during a defined period.

(4) Understanding Costs of Delivering End of Life Care

1. gain an understanding of the relationship of cost to the various steps of patient care, and
2. develop a framework for using "Process Cost" information as a tool for streamlining and improving care, while reducing costs.

During Year 2 we will build upon this work by integrating cost analysis techniques with Quality Improvement efforts so that we can design, individualize, and continually improve care that meets the needs of patients at the lowest costs.

With these broad and ambitious goals in mind, The NH End of Life Project sees itself as a place to begin to address issues surrounding end of life care.