[Skip to Navigation]
Sign In
Invited Commentary
August 24, 2020

Distinguishing Wants vs Preferences for End-of-Life Care: Can You Tell Me What You Want, What You Really, Really Want?

Author Affiliations
  • 1Department of Population Medicine, Harvard Medical School and Harvard Pilgrim Health Care Institute, Boston, MA
JAMA Netw Open. 2020;3(8):e2010907. doi:10.1001/jamanetworkopen.2020.10907

In this issue of JAMA Network Open, Bernacki et al1 attempt to describe the association between preferences for cardiopulmonary resuscitation (CPR) for patients undergoing dialysis and other preferences for end-of-life care. In their survey of 873 patients, 138 (84%) reported a desire to receive CPR. However, a patient’s preference for CPR was only sometimes associated with the domains of end-of-life care examined, such as preferences for receipt of mechanical ventilation, engagement in advance care planning, and receipt of hospice care. Therefore, the authors advise caution regarding extrapolating patient preferences and expectations regarding other aspects of end-of-life care based on their preferences for CPR. As a next step, Bernacki et al1 appropriately suggest that we need to integrate discussions about CPR preferences into a broader discussion about end-of-life care for patients on dialysis.

While this study is a good first attempt at characterizing wants regarding CPR in this patient population, the survey as designed limits our ability to truly understand patient preferences. The primary survey measure was worded as, “If you had to decide right now, would you want CPR (cardiopulmonary resuscitation) if your heart were to stop beating?” Responses ranged from “definitely yes” to “definitely no” on a 4-point Likert scale. However, preferences and wants are not synonymous. Preferences represent “a qualitative or quantitative assessment of the relative desirability or acceptability to patients of specified alternatives or choices among outcomes or other attributes that differ among alternative health interventions.”2 Preferences measure, in part, a patient’s willingness to accept the risks associated with treatments. Wants, on the other hand, can represent desires without constraints and under conditions of certainty.3 In the case of one’s health state after CPR, there is likely a great deal of uncertainty. What’s the likelihood that the patient would survive to discharge? Would they experience cognitive disability? Physical injury? To understand the true value of or preferences for a treatment, we need to evaluate what trade-offs patients are willing to make in exchange for the outcomes they are seeking.3 It is not surprising that such a high percentage of patients reported “preferences” for CPR. The way the question was framed, what was there to lose? The risks and trade-offs were not specified in the survey question and therefore, I have some reservations about the validity of the primary survey measure utilized in this study for assessing CPR preferences and values.

Certainly, Bernacki et al make a strong case for the use of decision support protocols for end-of-life care decisions that include education about therapies and interventions as well as values clarification exercises.1,4 Within those tools and exercises, it is important to ensure that patients are asked questions in ways that allow clinicians to accurately assess what patients truly want in the face of uncertainty and when facing a risk of negative outcomes. Moreover, evaluations of decision support tools should include measures of decision satisfaction, decisional conflict, and decision regret.5,6 This study is a good first step, but more rigorous research about preferences for end-of-life care for patients undergoing dialysis is needed to inform clinical protocols that support patient-centered care.

Back to top
Article Information

Published: August 24, 2020. doi:10.1001/jamanetworkopen.2020.10907

Correction: This article was corrected on June 14, 2021, to fix a value that was reported incorrectly in the accompanying Original Investigation.

Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2020 Wright DR. JAMA Network Open.

Corresponding Author: Davene R. Wright, PhD, Department of Population Medicine, Harvard Medical School and Harvard Pilgrim Health Care Institute, Boston, MA 02215 (davene_wright@harvardpilgrim.org).

Conflict of Interest Disclosures: None reported.

Bernacki  GM, Engelberg  RA, Curtis  JR,  et al.  Cardiopulmonary resuscitation preferences of people receiving dialysis.   JAMA Netw Open. 2020;3(8):e2010398. doi:10.1001/jamanetworkopen.2020.10398Google Scholar
U.S. Department of Health and Human Services. Patient preference information – voluntary submission, review in premarket approval applications, humanitarian device exemption applications, and de novo requests, and inclusion in decision summaries and device labeling. U.S. Department of Health and Human Services Food and Drug Administration. Updated October 23, 2016. Accessed May 2, 2020. https://www.fda.gov/media/92593/download
Parkin  D, Devlin  N.  Is there a case for using visual analogue scale valuations in cost-utility analysis?   Health Econ. 2006;15(7):653-664. doi:10.1002/hec.1086PubMedGoogle ScholarCrossref
Fagerlin  A, Pignone  M, Abhyankar  P,  et al.  Clarifying values: an updated review.   BMC Med Inform Decis Mak. 2013;13(suppl 2):S8. doi:10.1186/1472-6947-13-S2-S8PubMedGoogle ScholarCrossref
Stacey  D, Légaré  F, Lewis  K,  et al.  Decision aids for people facing health treatment or screening decisions.   Cochrane Database Syst Rev. 2017;4(4):CD001431. doi:10.1002/14651858.CD001431.pub5PubMedGoogle Scholar
Song  M-K, Sereika  SM.  An evaluation of the Decisional Conflict Scale for measuring the quality of end-of-life decision making.   Patient Educ Couns. 2006;61(3):397-404. doi:10.1016/j.pec.2005.05.003PubMedGoogle ScholarCrossref