Dying in America: A Constructive Step Forward and an Opportunity to Deepen Partnerships With Patients and Families
Authors: Debra L. Ness, Beverley H. Johnson
Journal: Annals of Internal Medicine (2014)

Ideas and Opinions3 February 2015Dying in America: A Constructive Step Forward and an Opportunity to Deepen Partnerships With Patients and FamiliesDebra L. Ness, MS and Beverley H. Johnson, BSNDebra L. Ness, MSFrom the National Partnership for Women & Families, Washington, DC, and the Institute for Patient- and Family-Centered Care, Bethesda, Maryland. and Beverley H. Johnson, BSNFrom the National Partnership for Women & Families, Washington, DC, and the Institute for Patient- and Family-Centered Care, Bethesda, Maryland.Author, Article, and Disclosure Informationhttps://doi.org/10.7326/M14-2537 SectionsAboutFull TextPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissions ShareFacebookTwitterLinkedInRedditEmail There may be no truer test of a health care system than how it supports persons with advanced illness or at the end of life and the loved ones who care for them. In that regard, most would agree that our health care system struggles and often fails. For too many of these immensely vulnerable patients and their families, the trauma inherent in having a loved one become critically ill and die is compounded, rather than alleviated, by a system that is ill-prepared to provide clinically sound patient- and family-centered care. In addition to causing physical and emotional suffering, this ...References1. Committee on Approaching Death; Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: National Academies Pr; 2014. Google Scholar2. Johnson BH, Abraham MR. Partnering With Patients, Residents, and Families: A Resource for Leaders of Hospitals, Ambulatory Care Settings, and Long-Term Care Communities. Bethesda, MD: Institute for Patient- and Family-Centered Care; 2012. Google Scholar3. Institute of Medicine. Best Care at Lower Cost: The Path to Continuously Learning Health Care in America. Washington, DC: National Academies Pr; 2013. Google Scholar4. Fulmer T, Gaines M. Partnering With Patients, Families, and Communities to Link Interprofessional Practice and Education. New York: Josiah Macy Jr. Foundation; 2014. Google Scholar5. Conference Recommendations: Partnering With Patients, Families, and Communities: An Urgent Imperative for Health Care, Arlington, Virginia, 3–6 April 2014. New York: Josiah Macy Jr. Foundation; 2014. Google Scholar6. Weinberger SE, Johnson BH, Ness DL. Patient- and family-centered medical education: the next revolution in medical education? Ann Intern Med. 2014;161:73-5. [PMID: 24756416] doi:10.7326/M13-2993 LinkGoogle Scholar Author, Article, and Disclosure InformationAuthors: Debra L. Ness, MS; Beverley H. Johnson, BSNAffiliations: From the National Partnership for Women & Families, Washington, DC, and the Institute for Patient- and Family-Centered Care, Bethesda, Maryland.Acknowledgment: The authors thank Deborah Dokken, a family leader and consultant, for her assistance in developing this article. Ms. Dokken was the Associate Director for the Initiative for Pediatric Palliative Care for 10 years and testified for and reviewed the IOM report "When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families."Disclosures: Authors have disclosed no conflicts of interest. Forms can be viewed at www.acponline.org/authors/icmje/ConflictOfInterestForms.do?msNum=M14-2537.Corresponding Author: Debra L. Ness, MS, National Partnership for Women & Families, 1875 Connecticut Avenue NW, Suite 650, Washington, DC 20009; e-mail, dness@nationalpartnership.org.Current Author Addresses:Ms. Ness: National Partnership for Women & Families, 1875 Connecticut Avenue NW, Suite 650, Washington, DC 20009.Ms. Johnson: Institute for Patient- and Family-Centered Care, 6917 Arlington Road, Suite 309, Bethesda, MD 20814.Author Contributions:Conception and design: D.L. Ness, B.H. Johnson.Analysis and interpretation of the data: D.L. Ness, B.H. Johnson.Drafting of the article: D.L. Ness, B.H. Johnson.Critical revision of the article for important intellectual content: D.L. Ness, B.H. Johnson.Final approval of the article: D.L. Ness, B.H. Johnson.This article was published online first at www.annals.org on 9 December 2014. PreviousarticleNextarticle Advertisement FiguresReferencesRelatedDetailsSee AlsoThe Doctor: For Life and at the End of Life Philip A. Pizzo Can the United States Buy Better Advance Care Planning? Scott D. Halpern and Ezekiel J. Emanuel Engaging Public Health in End-of-Life Issues: It Is Time to Step Up to the Plate Jaya K. Rao Celebrating the ACP Centennial: From the Annals Archive Deborah Cotton Metrics Cited byImpact of a Hospital Community Based Palliative Care Partnership: Continuum from Hospital to HomeMetasynthesis: Dying adults' transition process from cure‐focused to comfort‐focused careTrajectories of Hospitalization Cost Among Patients of End-Stage Lung Cancer: A Retrospective Study in ChinaÉvolution des droits de patients en fin de vieCelebrating the ACP Centennial: From the Annals ArchiveDeborah Cotton, MD, MPH, Deputy Editor 3 February 2015Volume 162, Issue 3 Page: 226-227 Keywords Caregivers Children Health care Health care providers Life expectancy Medical conditions Medical education Palliative care Patients Quality improvement ePublished: 3 February 2015 Issue Published: 3 February 2015 Copyright & PermissionsCopyright © 2015 by American College of Physicians. All Rights Reserved.PDF downloadLoading ...