0

The full content of Annals is available to subscribers

Subscribe/Learn More  >
Articles |

Perceptions by Family Members of the Dying Experience of Older and Seriously Ill Patients

Joanne Lynn, MD; Joan M. Teno, MD, MS; Russell S. Phillips, MD; Albert W. Wu, MD, MPH; Norman Desbiens, MD; Joan Harrold, MD, MPH; Michael T. Claessens, MD; Neil Wenger, MD, MPH; Barbara Kreling, BA; and Alfred F. Connors Jr., MD
[+] Article and Author Information

For the SUPPORT Investigators*. Note: The opinions and findings presented here are those of the authors and do not necessarily represent the views of the study sponsors. Grant Support: In part by the Robert Wood Johnson Foundation's Program on the Care of Critically-Ill Hospitalized Adults (SUPPORT [the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments] and HELP [Hospitalized Elderly Longitudinal Project]). Requests for Reprints: Joanne Lynn, MD, Center to Improve Care of the Dying, George Washington University Medical Center, 1001 22nd Street, Suite 820, Washington, DC 20037. Current Author Addresses: Drs. Lynn, Teno, Harrold, and Kreling: Center to Improve Care of the Dying, George Washington University Medical Center, 1001 22nd Street, Suite 820, Washington, DC 20037.


Copyright ©2004 by the American College of Physicians


Ann Intern Med. 1997;126(2):97-106. doi:10.7326/0003-4819-126-2-199701150-00001
Text Size: A A A

Background: Alleviating the problems faced by dying persons and their families has drawn substantial public attention, but little is known about the experience of dying.

Objective: To characterize the experience of dying from the perspective of surrogate decision makers, usually close family members (89%).

Design: Prospective cohort study.

Setting: Five teaching hospitals.

Patients: Persons who had one of nine serious medical conditions or were 80 years of age or older who died and for whom a surrogate decision maker completed an interview about the death.

Measurements: Medical records were reviewed and surrogate decision makers were interviewed.

Results: 4124 of 9105 seriously ill patients died (46%); 408 of 1176 elderly patients died (35%). The patients' family members were interviewed after 3357 persons (73%) had died. Of 1541 patients who survived the enrollment hospitalization, 46% died during a later hospitalization.

In the last 3 days of life, 55% of patients were conscious.Among these patients, pain, dyspnea, and fatigue were prevalent. Four in 10 patients had severe pain most of the time. Severe fatigue affected almost 8 in 10 patients. More than 1 in 4 patients had moderate dysphoria. Sixty-three percent of patients had difficulty tolerating physical or emotional symptoms.Overall, 11% of patients had a final resuscitation attempt.A ventilator was used in one fourth of patients, and a feeding tube was used in four tenths of patients. Most patients (59%) were reported to prefer a treatment plan that focused on comfort, but care was reported to be contrary to the preferred approach in 10% of cases.

Conclusions: Most elderly and seriously ill patients died in acute care hospitals. Pain and other symptoms were commonplace and troubling to patients. Family members believed that patients preferred comfort, but life-sustaining treatments were often used. These findings indicate important opportunities to improve the care of dying patients.

Figures

Grahic Jump Location
Figure 1.
Rates of consciousness and ability to communicate in patients 3 days before death, by medical condition, as reported by family members.

MOSF = multiple organ system failure.

Grahic Jump Location
Grahic Jump Location
Figure 2.
Rates of severe symptoms in patients 3 days before death, as reported by family members.

Family members of elderly patients were not asked about dyspnea. MOSF = multiple organ system failure.

Grahic Jump Location
Grahic Jump Location
Figure 3.
Rates of preferring comfort care rather than life-extending care and rates of perceiving that care was not in accord with patient preference for comfort care in the 3 days before death, as reported by family members.

MOSF = multiple organ system failure.

Grahic Jump Location
Grahic Jump Location
Figure 4.
Treatments administered during the last 3 days of life, as reported by family members.

MOSF = multiple organ system failure.

Grahic Jump Location

Tables

References

Letters

NOTE:
Citing articles are presented as examples only. In non-demo SCM6 implementation, integration with CrossRef’s "Cited By" API will populate this tab (http://www.crossref.org/citedby.html).

Comments

Submit a Comment
Submit a Comment

Summary for Patients

Clinical Slide Sets

Terms of Use

The In the Clinic® slide sets are owned and copyrighted by the American College of Physicians (ACP). All text, graphics, trademarks, and other intellectual property incorporated into the slide sets remain the sole and exclusive property of the ACP. The slide sets may be used only by the person who downloads or purchases them and only for the purpose of presenting them during not-for-profit educational activities. Users may incorporate the entire slide set or selected individual slides into their own teaching presentations but may not alter the content of the slides in any way or remove the ACP copyright notice. Users may make print copies for use as hand-outs for the audience the user is personally addressing but may not otherwise reproduce or distribute the slides by any means or media, including but not limited to sending them as e-mail attachments, posting them on Internet or Intranet sites, publishing them in meeting proceedings, or making them available for sale or distribution in any unauthorized form, without the express written permission of the ACP. Unauthorized use of the In the Clinic slide sets will constitute copyright infringement.

Toolkit

Buy Now

to gain full access to the content and tools.

Want to Subscribe?

Learn more about subscription options

Advertisement
Related Articles
Related Point of Care
Topic Collections

Buy Now

to gain full access to the content and tools.

Want to Subscribe?

Learn more about subscription options

Forgot your password?
Enter your username and email address. We'll send you a reminder to the email address on record.
(Required)
(Required)