Ethical Dilemma in the nursing field

Letters to the Editor

Exploring the Definition of an Informed Health Care Proxy

Joseph D. Ma, PharmD,1,2 Melanie Benn, LCSW,3 Sandahl H. Nelson, MS,1

Ashleigh Campillo, BS,1 Sean F. Heavey, BS,1 Arlene Cramer, NP1 Carolyn Revta, MPH,1

Kathryn Thornberry, LCSW,3 and Eric J. Roeland, MD, FAAHPM1

Dear Editor: The goal of advance care planning (ACP) is for patients to

communicate their end-of-life (EoL) treatment preferences to a selected proxy. However, it is not clear what information must be shared to adequately inform a proxy. Given the practical challenges of measuring ACP conversations, previous studies have focused on measuring ACP surrogates such as code status documentation or completion of advance directives (ADs) and/ or physician orders for life-sustaining treatment (POLSTs).1,2

However, it has been demonstrated that AD completion alone does not necessarily promote high-quality EoL communication or understanding between patients and proxies.3

The aim of this pilot study was to determine the feasibility of completing a focused ACP conversation identifying an informed proxy in a single clinic visit. This study was com- pleted in adult cancer patients with a prognosis of less than one year. A clinical social worker led the ACP intervention between study patients and proxies focusing on three EoL preferences: (1) the patient’s personal definition of quality of life, (2) his or her specific plan if he or she cannot achieve this quality of life, and (3) desired location of death. The proxy was deemed ‘‘informed’’ if he or she understood these three

EoL preferences. Patients were encouraged but not required to complete an AD/POLST and followed until death.

Thirty-five patients were screened and 34 patients were available for the analytic sample (Table 1). Eighty-two per- cent (n = 28) of proxies were ‘‘informed’’ following the in- tervention, and 65% (n = 22) completed the intervention in a single visit. Following the intervention, 54% completed a new AD (n = 15) and 9% (n = 3) completed a POLST. There was a statistically significant increase in AD/POLST com- pletion ( p < 0.001). For those patients that died (n = 31), there was 81% (n = 25) and 61% (n = 19) concordance of desired and actual code status and location of death, respectively. Neither concordance was significantly different based on the completion of an AD/POLST ( p = 0.34 and p = 0.27). These rates are higher than those demonstrated in prior studies,1

including our institutional historical rate.4

In this study we explored the definition of an ‘‘informed’’ health care proxy through the use of this ACP approach and observation of desired versus actual EoL preferences. Results of this pilot study suggest a focused ACP intervention was feasible and may be sufficient to inform a proxy and achieve EoL preferences, but require further prospective validation.

Table 1. Results

Number Percentage p value

AD/POLST before the intervention 7 of 34 21%

Completed intervention & identified an ‘‘informed’’ proxy 28 of 34 82% Completed in a single clinic visit 22 of 34 62% New and/or revised AD/POLST 22 of 34 65% Rate of new AD/POLST completion 18 of 34 53% p < 0.001 Selected DNR code status 29 of 34 85% Selected ‘‘out of hospital’’ as preferred location of death 22 of 34 65%

Patients followed until death 31 of 34 91% Actual code status determined 27 of 31 87% Code status concordance 25 of 31 81% Actual location of death determined 25 of 31 81% Location of death concordance 19 of 31 61% ‘‘Informed proxy’’ and concordant code status p = 0.57 Completion of AD/POLST and concordance with code status p = 0.27

AD, advance directive; DNR, do not resuscitate; POLST, physician orders for life-sustaining treatment.

1Moores Cancer Center, 2Skaggs School of Pharmacy & Pharmaceutical Sciences, University of California, San Diego, La Jolla, California.

3University of California, San Diego Medical Center, San Diego, California. Accepted October 26, 2015.

JOURNAL OF PALLIATIVE MEDICINE Volume 19, Number 3, 2016 ª Mary Ann Liebert, Inc. DOI: 10.1089/jpm.2015.0439

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Acknowledgments

This study was supported in part by the American Cancer Society Institutional Research Grant 70-002 provided through the University of California San Diego Moores Cancer Center.

References

1. Temel JS, Greer JA, Admane S, et al.: Code status docu- mentation in the outpatient electronic medical records of patients with metastatic cancer. J Gen Intern Med 2010; 25:150–153.

2. Chiarchiaro J, Arnold RM, White DB: Reengineering ad- vance care planning to create scalable, patient- and family- centered interventions. JAMA 2015;313:1103–1104.

3. Shalowitz DI, Garrett-Mayer E, Wendler D: The accuracy of surrogate decision makers: A systematic review. Arch Intern Med 2006;166:493–497.

4. Horton JM, Hwang M, Ma JD, Roeland E: A single-center, retrospective chart review evaluating outpatient code status documentation in the epic electronic medical record for patients with advanced solid tumor cancer. J Clin Oncol (meeting abstracts) 2013;31.

Address correspondence to: Eric J. Roeland, MD, FAAHPM

University of California, San Diego Moores Cancer Center

La Jolla, CA 92093

E-mail: [email protected]

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