Citizen Voices

A Report on Aging, Living with Serious Illnessand Family Caregiving

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Executive Summary - pdf format - 245 Kb

Citizen Voices Report - pdf format - 1.16 Mb

Complete Results - pdf format - 158 Kb


Excerpt from the Executive Summary

Table of Contents (below)

...Excerpted from the Executive Summary

Reclaiming the End of Life is a non-partisan, citizen driven initiative for compelling presidential candidates to address the issues that matter most to frail elders, seriously ill people and the families who care for them. The Initiative is comprised of people in New Hampshire and focused on our state’s first-in-the-nation primaries, but it addresses problems of national importance.

Despite advances in medicine and best practices based on abundant research, too many people still suffer needlessly as they approach the end of life and too often their families suffer with them. Frail elders, chronically ill people, and family caregivers face stark deficiencies in health care and lack basic support for their needs and well-being. And as difficult as things are today, these may soon seem like the proverbial good old days….

A demographic flood of elderly and chronically ill Americans has already exposed serious fractures in our nation’s health care and social systems. Soon the gathering tide will overwhelm American communities and families. We have time to avert disaster, but only if we start now.

A number of governmental agencies, Institutes and expert panels have called for action and offered specific recommendations for correcting current deficiencies and avoiding future disasters. Among them, the Institute of Medicine and the Congressionally-empanelled Citizens Working Group on Health Care…

In the past 15 years, thanks to major funding by leading American philanthropic foundations, innovative models of care have been developed – and are ready for use.

The situation is analogous to those that have preceded other, more limited crises. In the days that follow national tragedies, such as hurricane Katrina’s devastation of New Orleans or the collapse of the I-35W Twin Cities bridge, we often learn that experts had been warning for years of untended problems and a looming catastrophe.

The Reclaiming Initiative convened 8 Citizen Forums in the past 6 months and, using participant-response technology, collected data from over 450 citizens in towns around New Hampshire. We asked what is most important to them as they contemplate the waning phase of life – and what they want policy makers to know as they develop health and social policies to improve the lives of frail elders, people with serious illness and their family caregivers.

The results are compelling and provide a sense of the specific policy opportunities that could avert, or at least substantially diminish, the social and public health crisis that aging, dying and caregiving represent.

Preview - TABLE of CONTENTS

Introduction 1
Understanding the Crisis 2
Model Programs and Approaches for Caring Well 4
Starting the Conversation 8
What it Means 14
Sponsors/Partners 16
Authors 16
References 17

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Dying Well With Jeff Video
Reclaiming the End
(Full Video - 12:35 mins)

 

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