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Life Support for Patients without a Surrogate Decision Maker: Who Decides?

Douglas B. White, MD, MAS; J. Randall Curtis, MD, MPH; Leslie E. Wolf, JD, MPH; Thomas J. Prendergast, MD; Darren B. Taichman, MD, PhD; Gary Kuniyoshi, MD; Frank Acerra, DO; Bernard Lo, MD; and John M. Luce, MD
[+] Article and Author Information

From the University of California, San Francisco, and San Francisco General Hospital, San Francisco, California; University of Washington School of Medicine, Seattle, Washington; Dartmouth–Hitchcock Medical Center, Lebanon, New Hampshire; University of Pennsylvania, Philadelphia, Pennsylvania; Oregon Health and Science University, Portland, Oregon; and Beth Israel Medical Center, New York, New York.


Acknowledgments: The authors thank Sandra Kaplan, BSN, and Barbara Finkel, MSN, for assistance with data collection.

Grant Support: By National Institutes of Health grants KL2 RR024130 from the National Center for Research Resources, a component of the National Institutes of Health Roadmap for Medical Research (Dr. White); K24 HL 68593 (Dr. Curtis); and MH 42459 (Ms. Lo). Ms. Lo and Dr. Wolf were also supported by the Greenwall Foundation.

Potential Financial Conflicts of Interest: None disclosed.

Requests for Single Reprints: Douglas B. White, MD, MAS, University of California, San Francisco, Program in Medical Ethics, 521 Parnassus Avenue, Suite C-126, Box 0903, San Francisco, CA 94143-0903; e-mail, dwhite@medicine.ucsf.edu.

Current Author Addresses: Drs. White and Lo and Ms. Wolf: University of California, San Francisco, Program in Medical Ethics, 521 Parnassus Avenue, Suite C-126, Box 0903, San Francisco, CA 94143-0903.

Dr. Curtis: University of Washington Harborview Medical Center, Box 359762, 325 Ninth Avenue, Seattle, WA 98104.

Dr. Prendergast: Dartmouth–Hitchcock Medical Center, 5-C One Medical Center Drive, Lebanon, NH 03756.

Dr. Taichman: Pulmonary, Allergy and Critical Care Division, University of Pennsylvania School of Medicine, University of Pennsylvania Medical Center–Presbyterian, Suite 441, 39th Street and Market Street, Philadelphia, PA 19104.

Dr. Kuniyoshi: Oregon Health Sciences University, Veterans Affairs Medical Center, 3710 Southwest US Veterans Hospital Road, Portland, OR 97207.

Dr. Acerra: Division of Pulmonary and Critical Care Medicine, Beth Israel Medical Center, First Avenue at 16th Street, New York, NY 10003.

Dr. Luce: Division of Pulmonary and Critical Care Medicine, San Francisco General Hospital, 1001 Potrero Avenue, Room 5 K1, San Francisco, CA 94110.

Author Contributions: Conception and design: D.B. White, J.R. Curtis, T.J. Prendergast, D.B. Taichman, B. Lo, J.M. Luce.

Analysis and interpretation of the data: D.B. White, J.R. Curtis, L.E. Wolf, T.J. Prendergast, J.M. Luce.

Drafting of the article: D.B. White, T.J. Prendergast, B. Lo, J.M. Luce.

Critical revision of the article for important intellectual content: D.B. White, J.R. Curtis, L.E. Wolf, T.J. Prendergast, D.B. Taichman, B. Lo.

Final approval of the article: D.B. White, J.R. Curtis, L.E. Wolf, B. Lo, J.M. Luce.

Provision of study materials or patients: J.R. Curtis, T.J. Prendergast, D.B. Taichman, G. Kuniyoshi, F. Acerra, J.M. Luce.

Statistical expertise: D.B. White, J.R. Curtis.

Obtaining of funding: D.B. White, J.R. Curtis.

Administrative, technical, or logistic support: D.B. White, B. Lo, J.M. Luce.

Collection and assembly of data: D.B. White, J.R. Curtis, L.E. Wolf, T.J. Prendergast.


Ann Intern Med. 2007;147(1):34-40. doi:10.7326/0003-4819-147-1-200707030-00006
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A total of 3011 patients were admitted to intensive care units during the study period. Table 1 shows that the combined mortality rate for all intensive care units was 15.0% (451 of 3011 patients). Overall, 5.5% (25 of 451 patients) of deaths in intensive care units occurred in incapacitated patients who lacked surrogate decision makers and advance directives. The percentage of deaths among incapacitated patients without surrogates ranged from 0% to 27% across the 7 study institutions (Table 1).

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Grahic Jump Location
Figure.
Study flow diagram.

*Patients for whom physicians would have discussed forgoing treatment with a surrogate. †For 1 patient, a do-not-resuscitate (DNR) order was not considered but withdrawing treatment was considered. ‡Patients died before discharge from the intensive care unit.

Grahic Jump Location

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Comments

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Deciding the Fate of Vulnerable Patients
Posted on July 12, 2007
John Carney
Center for Practical Bioethics
Conflict of Interest: None Declared

Thank you for the timely and poignant article on Life Support for Patients without a Surrogate Decision Maker: Who Decides? (July 3, 2007) by Drs. White, Curtis, et.al. This type of study not only reveals deficits in the decision making processes in US hospitals, it provides much needed evidence of the work that remains to be done in resolving the concerns raised by the disability community in end of life decision making.

Only the week before the study appeared in print, the Center for Practical Bioethics hosted a national summit on advance care planning in Chicago involving representatives from disability rights groups, life protection advocacy organizations and end of life coalition leaders from the across the country. We devoted two days to intense dialogue about the fears, challenges, and barriers that Americans face in articulating their end of life wishes.

A major concern raised repeatedly by disability representatives was the issue of physicians and other healthcare professionals deciding the fates of vulnerable patients based on quality of life assessment without the benefit of independent and judicial review.

This study corroborates those concerns and challenges all of us to do a better job of assessing patient preferences, prior to crisis, and absent those assessments, determine more uniform and standardized approaches to making end of life decisions befitting the patient's condition and acceptable quality of life.

We cannot make effective "best interest" decisions about the quality of patients' lives when we act in a vacuum, or based solely on our own assessment. We must build decision making systems that take into account persons unlike ourselves who may be able to provide insights and distinctions about quality of lives that we judge differently from our own.

This study echoes the cry of those we heard at the Summit. We owe it to all those we care for to remedy this substandard approach to end of life care.

Conflict of Interest:

None declared

Letter to Editor
Posted on July 15, 2007
Rudolph J. Napodano
Emeritus Professor, Medicine, University of Rochester
Conflict of Interest: None Declared

An important and interesting analysis into what physicians actually do about initiating/discontinuing life support measures under this unique clinical circumstance. The authors conclude with an opinion, "it seems prudent for individual physicians to involve multiple perspectives and disciplines in the decision-making process, such as a hospital ethics committee". The presumption here is that the rights of the patient are protected. I agree with the potential benefits the authors cite. I also suspect that many physicians in this situation would welcome this help. However, some may not, thus raising caveats not addressed in the article. For example: Would this unique clinical situation require a referral to the hospital ethics committee, or would this decision be left up to the attending of record and the team caring for the patient? Suppose the hospital ethics committee renders a judgment that conflicts directly with the religious, philosophical or cultural values of the attending physician caring for the patient, and he/she then disagrees? Will the committee then have authority to replace the attending with another physician willing to carry out their recommendation? In this latter instance suppose an attending physician refuses to relinquish his/her role in the care of the patient, stating that he/she knows the clinical circumstances best and is acting within the guidelines of the ethical principles of beneficence and primum non nocere? Remember this attending and the team have an active and established patient-provider interaction. Will the process then enter the judicial system for resolution? Referral to a hospital ethics committee may yield more consistency in decisions about life support for patients without a surrogate but more evidence is needed to support this? I trust some of these questions will be answered in a subsequent investigation.

Conflict of Interest:

None declared

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