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National Academies Press
Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life

Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life


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For patients and their loved ones, no care decisions are more profound than those made near the end of life. Unfortunately, the experience of dying in the United States is often characterized by fragmented care, inadequate treatment of distressing symptoms, frequent transitions among care settings, and enormous care responsibilities for families. According to this report, the current health care system of rendering more intensive services than are necessary and desired by patients, and the lack of coordination among programs increases risks to patients and creates avoidable burdens on them and their families. Dying in America is a study of the current state of health care for persons of all ages who are nearing the end of life.

Death is not a strictly medical event. Ideally, health care for those nearing the end of life harmonizes with social, psychological, and spiritual support. All people with advanced illnesses who may be approaching the end of life are entitled to access to high-quality, compassionate, evidence-based care, consistent with their wishes.

Dying in America evaluates strategies to integrate care into a person- and family-centered, team-based framework, and makes recommendations to create a system that coordinates care and supports and respects the choices of patients and their families. The findings and recommendations of this report will address the needs of patients and their families and assist policy makers, clinicians and their educational and credentialing bodies, leaders of health care delivery and financing organizations, researchers, public and private funders, religious and community leaders, advocates of better care, journalists, and the public to provide the best care possible for people nearing the end of life.

Product Details

ISBN-13: 9780309303101
Publisher: National Academies Press
Publication date: 04/19/2015
Pages: 638
Sales rank: 760,152
Product dimensions: 6.00(w) x 9.00(h) x 1.70(d)

Table of Contents

Acronyms xxi

Summary 1

1 Introduction 21

Why This Study Is Important Now 24

Study Charge and Approach 25

Study Scope 29

17 Years of Progress 32

Dying in America: 2014 33

Research Needs 39

Summary 39

Organization of the Report 40

References 41

2 The Delivery of Person-Centered, Family-Oriented End-of-Life Care 45

Review of the Current Situation 46

The Palliative Approach 55

The Pursuit of Quality in Care Near the End of Life 74

The Problem of Prognosis 87

Family Caregivers 92

Research Needs 97

Findings, Conclusions, and Recommendation 100

References 104

3 Clinician-Patient Communication and Advance Care Planning 117

Background 119

The Current State of Advance Care Planning and What It Achieves 124

Advance Care Planning and Treatment Preferences Among Specific Population Groups 141

Elements of Good Communication in Advance Care Planning 157

Model Advance Care Planning Initiatives 172

A Proposed Life Cycle Model of Advance Care Planning 185

Research Needs 187

Findings, Conclusions, and Recommendation 189

References 191

Annex 3-1: Advance Care Planning in the Context of Common Serious Conditions 211

Annex 3-2: Oregon Physician Orders for Life-Sustaining Treatment (POLST) Form 217

4 Professional Education and Development 221

Progress and Continuing Needs 221

Impediments to Changing the Culture of Care Through Education 225

Roles and Preparation of Palliative Care Team Members 237

Findings, Conclusions, and Recommendation 250

References 253

5 Policies and Payment Systems to Support High-Quality End-Of-Life Care 263

The Quality Challenges 266

The Cost Challenges 267

Financing and Organization of End-of-Life Care 271

Perverse Incentives and Program Misalignment 275

The Gap Between Services Paid for and What Patients and Families Want and Need 307

The Changing Health Care System: Financing and Organization 314

The Need for Greater Transparency and Accountability 324

Research Needs 326

Findings, Conclusions, and Recommendation 328

References 331

6 Public Education and Engagement 345

The State of Public Knowledge About End-of-Life Care 347

The Changing Climate for Discussion of Death and Dying 352

Considerations for Public Education and Engagement Campaigns 355

Controversial Issues 362

Recommendation 370

References 371

Annex 6-1: Selected Public Engagement Campaigns on Health-Related Topics 378

Glossary 385

Appendixes 391

A Data Sources and Methods 391

B Recommendations of the Institute of Medicine's Reports Approaching Death (1997) and When Children Die (2003): Progress and Significant Remaining Gaps 407

C Summary of Written Public Testimony 443

D Financing Care at the End of Life and the Implications of Potential Reforms 455

E Epidemiology of Serious Illness and High Utilization of Health Care 487

G Pediatric End-of-Life and Palliative Care: Epidemiology and Health Service Use 533

G Committee Biographies 573

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