Community Coalition for End of Life Care

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The community coalition for End of Life care completed a survey of community members last fall trying to understand what people in our communities would want should they be suffering from a chronic illness near the end of life. Since then the coalition has been working to address raised concerns.

Years ago, the majority of people died from short term illnesses or abrupt conditions such as infections, traumatic injuries, or complications of heart attacks and stroke. But times have changed. Medical advances over the last few decades have dramatically changed people’s later years. Now we can live for years with many cancers even those that have metastasized, heart and kidney failure, and complications of stroke and brain injury. These days, people live much longer with serious chronic conditions knowing that the disease or illness will eventually lead to death, but not knowing exactly when. This knowledge of one’s impending death can go on for many months or years. We were interested in what our community felt was most important during these later months or years.

We distributed surveys at Littleton Regional Hospital, North Country Home Health and Hospice, White Mountain Mental Health, town meetings, church services, by email and individually throughout the community. We received 191 surveys from community members and 15 from those felt to be key community leaders (political leaders and leaders of health care institutions). The results are summarized below and the complete survey results can be accessed at the HelpLittleton.com website through our link for the CCELC (Community Coalition for End of Life Care) once it is available or by contacting a coalition member (see below).

Over 75% of responders had experience with caring for someone who had a life limiting (incurable) condition and an equal number felt changes needed to be made in this area. People responded stating that we need more education on end of life care, more media exposure, and a cultural change toward better acceptance of death and dying.

Possibly the most important and revealing message from the survey came from the question “if you were in need of care due to a chronic, life limiting illness, what would be most important to you?” Generally the medical approach is to do all possible to keep people alive and to aggressively investigate symptoms. Not a single person responding to the survey wanted “to live as long as possible” or to “have the most intensive medical treatment to extend life”. Instead responders wrote in, in order of importance and frequency of response (# in parentheses):
1. Palliative care focused on quality of life not quantity: ie “freedom from pain”, “the best care to control my symptoms” (37)
2. Being at home and with family (37)
3. Support for family and loved ones (26)
4. Not being a burden to loved ones either financially or emotionally (17)
5. Spiritual and faith based support (16)
6. Respect and Dignity (15)

Interestingly, this is very consistent with national surveys where patients and family members consistently list: good palliative care, being with family, support for family and not being a burden to family in the top 5 answers to the question, “what is most important to you?” if suffering from a chronic illness near the end of life.

Responders felt resources were limited causing huge burdens on caregivers and that we need better resources to support those suffering from chronic conditions especially financial resources. When asked what would be most important if caring for a loved one with a chronic incurable illness, the largest response was need for “respite”.

Many (# in parentheses) respondents checked off community education on End of Life Care (67), affordable assisted living (71), a residential hospice house (66), adult day care (60), and affordable private duty care (56) as key areas of need.

When asked where people would go to for information and support they wrote Hospice, both North Country Home Health and Hospice (our Medicare certified hospice) as well as Hospice of the Littleton Area (our volunteer hospice), their primary care provider, the hospital and their church as the most frequent areas of support.

The CCELC (community coalition for end of life care) is using this information to develop, plan and implement many community wide interventions to address the needs identified in this survey. We meet monthly and if you would like to take part please contact Phil Lawson at Ammonoosuc Community Health Services (444-2464) or Inga Johnson at North Country Home Health and Hospice (444-5317) for more information.

The Community Coalition for End of Life Care is a collaboration of providers and community members working to improve quality of life for those suffering from chronic incurable illness.

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