Placing Value on End-of-Life Care—Is It Time for a New Taxonomy? | End of Life | JAMA Network Open | JAMA Network
[Skip to Navigation]
Sign In
Invited Commentary
Health Policy
November 1, 2019

Placing Value on End-of-Life Care—Is It Time for a New Taxonomy?

Author Affiliations
  • 1Department of Anesthesiology, Columbia University, New York, New York
  • 2Department of Critical Care Medicine, Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada
  • 3Department of Anesthesia, University of Toronto, Toronto, Ontario, Canada
  • 4Interdepartmental Division of Critical Care Medicine, University of Toronto, Toronto, Ontario, Canada
JAMA Netw Open. 2019;2(11):e1914466. doi:10.1001/jamanetworkopen.2019.14466

Advocates of advance care planning (ACP) focus on its potential to help ensure that care is delivered in alignment with the patient’s values. The importance of ACP at the end of life is increasingly promoted based on the underlying assumption that if patients are properly informed about care options, many will opt for less aggressive care than they otherwise receive. This belief is based on a body of literature that suggests (1) people generally prioritize quality over quantity of life; (2) in the setting of a poor prognosis, patients choose care focused on comfort; and (3) when surveyed, physicians report also preferring nonaggressive care at the end of life.1,2 Driving the urgency of these conversations is the concern that much of the care that is currently provided toward the end of life may be overly aggressive and thus misaligned with patients’ values.3 Misaligned care is potentially harmful to multiple stakeholders, as it may cause a higher burden of symptoms and be associated with worse quality of death,4 increase moral distress for clinicians,5 and represent low-value care for the health care system.6

The study by Ashana et al7 provides insights into the association of ACP with health care utilization. Using a national insurance database from Medicare Advantage, Ashana et al7 conducted a retrospective cohort study of patients with serious illness to determine if the occurrence of an ACP visit was associated with differences in death, health care utilization, and costs in the subsequent 6 months. Presence of an ACP visit was determined using the Current Procedural Terminology codes for ACP instituted in 2016; health care utilization was defined as emergency department visits, hospitalizations, and use of hospice, as well as receipt of a range of intensive therapies, such as chemotherapy. One important finding of the study was that ACP visits were uncommon, occurring only in 4.7% of patients overall and 14.2% of patients who died during the follow-up period. Patients who received an ACP visit were more seriously ill and had a greater number of comorbidities and higher health care utilization in the year prior. After use of propensity score methods to adjust for differences in patients’ likelihood of receiving ACP, having received ACP was associated with more hospitalizations with and without treatment in an intensive care unit and higher overall costs of care but was also associated with higher rates of hospice use. Although overall rates of receiving intensive therapies were lower for those with an ACP visit, this was driven primarily by lower frequency of receiving chemotherapy, a result that is difficult to interpret because the ACP group had a smaller proportion of individuals with cancer than the group that did not receive ACP. Other limitations of the study by Ashana et al7 included the potential for misclassification of the ACP visit exposure and residual confounding by indication despite the use of propensity score methods, as patients who received ACP were also more likely to die during the follow-up period. Given these concerns, the authors were appropriately conservative in their conclusions, suggesting that their findings highlighted the need for further experimental studies to determine a causal relationship between ACP and patients’ outcomes.

However, if patients in the study by Ashana et al7 received successful ACP and their outcomes were representative of goal-concordant care, our current conceptualization of health care utilization at the end of life as being generally undesirable may be wrong or, at the very least, inexact. Other recent work is consistent with a potential need to revisit this belief. A 2016 study8 of US physicians as patients that examined actual health care utilization at the end of life (as opposed to stated preferences in surveys) demonstrated that physicians were not different in their care patterns compared with similar individuals without specific medical knowledge (eg, lawyers). In a 2019 Canadian study,9 physician patients were more likely to be admitted to an intensive care unit and to receive chemotherapy, and they were also more likely to receive hospice and palliative care. Since physicians are arguably the most well-informed consumers of health care, these studies,8,9 along with the findings from the study by Ashana et al,7 emphasize the possibility that improving goal concordance may sometimes actually result in increased health care utilization.

While seemingly paradoxical, hospitalization and intensive care unit use may actually be goal concordant for patients who would be classified as choosing comfort-focused care. Given that patients and families list adequate symptom control as one of their most important concerns,10 it may be that for some patients with certain types of terminal illnesses, symptoms are best managed in an acute hospital setting. For example, dyspnea may be particularly frightening to experience at home and lead individuals, even those with adequate palliative support, to seek hospital care, whereas other symptoms may be more manageable in the outpatient setting. Similarly, intensive care units may be preferred to other wards because of higher nurse-to-patient ratios, the presence of more clinicians, and more frequent symptom assessment and medication titration. Thus, what appears to be paradoxical may simply indicate an insufficient understanding of the value that certain types of care may hold for patients and families and how this may ultimately drive care choices. In particular, informed and value-aligned care may look different for patients with different conditions and symptoms.

Ensuring that the care that is delivered matches the care that is desired by patients and families is the ultimate objective for an ACP intervention, and the study by Ashana et al7 highlights existing opportunities to better refine our thinking about what constitutes goal-concordant care. Instead of treating health care utilization as a dichotomous outcome in which more care is always poor-quality care, it may be appropriate to move toward a more nuanced taxonomy of high-quality care in which different types and patterns of health care utilization at the end of life are considered in a manner that best reflects their value to patients and families. Given the difficult choices that patients and families face at the end of life, it is perhaps only fitting that our approach to this issue begins to mirror that complexity.

Back to top
Article Information

Published: November 1, 2019. doi:10.1001/jamanetworkopen.2019.14466

Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2019 Hua M et al. JAMA Network Open.

Corresponding Author: Hannah Wunsch, MD, MSc, Department of Critical Care Medicine, Sunnybrook Health Sciences Centre, 2075 Bayview Ave, Room D108, Toronto, ON M5R 3B2, Canada (

Conflict of Interest Disclosures: Dr Hua reported receiving grants from the National Institute on Aging and American Federation for Aging Research. No other disclosures were reported.

Fried  TR, Bradley  EH, Towle  VR, Allore  H.  Understanding the treatment preferences of seriously ill patients.  N Engl J Med. 2002;346(14):1061-1066. doi:10.1056/NEJMsa012528PubMedGoogle ScholarCrossref
Periyakoil  VS, Neri  E, Fong  A, Kraemer  H.  Do unto others: doctors’ personal end-of-life resuscitation preferences and their attitudes toward advance directives.  PLoS One. 2014;9(5):e98246. doi:10.1371/journal.pone.0098246PubMedGoogle Scholar
Khandelwal  N, Curtis  JR, Freedman  VA,  et al.  How often is end-of-life care in the United states inconsistent with patients’ goals of care?  J Palliat Med. 2017;20(12):1400-1404. doi:10.1089/jpm.2017.0065PubMedGoogle ScholarCrossref
Wright  AA, Keating  NL, Balboni  TA, Matulonis  UA, Block  SD, Prigerson  HG.  Place of death: correlations with quality of life of patients with cancer and predictors of bereaved caregivers’ mental health.  J Clin Oncol. 2010;28(29):4457-4464. doi:10.1200/JCO.2009.26.3863PubMedGoogle ScholarCrossref
Elpern  EH, Covert  B, Kleinpell  R.  Moral distress of staff nurses in a medical intensive care unit.  Am J Crit Care. 2005;14(6):523-530.PubMedGoogle Scholar
Critical Care Societies Collaborative; ABIM Foundation.  Five things physicians and patients should question. Choosing Wisely website. Accessed June 4, 2014.
Ashana  DC, Chen  X, Agiro  A,  et al.  Advance care planning claims and health care utilization among seriously ill patients near the end of life.  JAMA Netw Open. 2019;2(11):e1914471. doi:10.1001/jamanetworkopen.2019.14471Google Scholar
Weissman  JS, Cooper  Z, Hyder  JA,  et al.  End-of-life care intensity for physicians, lawyers, and the general population.  JAMA. 2016;315(3):303-305. doi:10.1001/jama.2015.17408PubMedGoogle ScholarCrossref
Wunsch  H, Scales  D, Gershengorn  HB,  et al.  End-of-life care received by physicians compared with nonphysicians.  JAMA Netw Open. 2019;2(7):e197650. doi:10.1001/jamanetworkopen.2019.7650PubMedGoogle Scholar
Yun  YH, Kim  KN, Sim  JA,  et al.  Priorities of a “good death” according to cancer patients, their family caregivers, physicians, and the general population: a nationwide survey.  Support Care Cancer. 2018;26(10):3479-3488. doi:10.1007/s00520-018-4209-yPubMedGoogle ScholarCrossref
Limit 200 characters
Limit 25 characters
Conflicts of Interest Disclosure

Identify all potential conflicts of interest that might be relevant to your comment.

Conflicts of interest comprise financial interests, activities, and relationships within the past 3 years including but not limited to employment, affiliation, grants or funding, consultancies, honoraria or payment, speaker's bureaus, stock ownership or options, expert testimony, royalties, donation of medical equipment, or patents planned, pending, or issued.

Err on the side of full disclosure.

If you have no conflicts of interest, check "No potential conflicts of interest" in the box below. The information will be posted with your response.

Not all submitted comments are published. Please see our commenting policy for details.

Limit 140 characters
Limit 3600 characters or approximately 600 words
    1 Comment for this article
    ACP As Now Practiced Does Not Benefit Patients
    Andrew Kahr, Ph.D. | Harvard University
    The "invention" of Palliative Care as a specialty had at least two important causes. First, the pressure to reduce the high percentage of healthcare costs spent on patients who (like all the rest of us) are going to die anyway. Second, physicians' strong desire to avoid responsibility for patients when "we can't do anything more for them." 

    All patients should receive thoughtful and effective palliative care whenever needed to reduce discomfort. There is a greater need for this in total among the non-dying than among the dying. And then there is the rarely-drawn distinction: If
    she's dying, then treat without regard to addiction potential. Otherwise, not. As a patient who was not dying, I can testify that in general house staff don't give a damn about your pain. (Most patients are too socialized or weak to scream.) And they hate "tubes!"

    So, ACP was an incredibly clever method of getting justification for "just let them die," saving a ton of money and getting the oncology team, the ICU and the respiratory team off these unpleasant cases. Of course, ACP doesn't work equally well for all. The patient who says "Then just let me die now without discomfort," like the patient who says "put me under until I die" is not going to be accommodated. There's a limit to how far "we" will go to save money and avoid our own psychological discomfort. That's disgraceful.

    ACP is used to get the patient to say "no tubes or resuscitation." However, there is considerable evidence, for instance in JAMA Network Open, that involving patients in treatment decisions often has irrational results. Too many stage 1 prostate cancers choose "cut me up" over active surveillance, for example.

    How about using rather than just talking about evidence-based medicine?