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. 2026 Sep 14;39(6):1043–1044. doi: 10.1080/08998280.2026.2730097

Researching palliative care documentation outcomes: coding alone fails to find the true bleeder

Kyle Weinstein 1, Derek Chui 1,✉
PMCID: PMC13682249  PMID: 42734310

Palliative care attends to the physical, functional, psychological, practical, and spiritual consequences of a serious illness. It is a person- and family-centered approach to care, providing people living with serious illness relief from the symptoms and stress of an illness. —Clinical Practice Guidelines for Quality Palliative Care1

The ambitious study by Alnounou et al in this issue of Baylor University Medical Center Proceedings utilizes a large nationally representative dataset to examine whether palliative care documentation is associated with the primary outcomes of specific escalation in medical interventions in patients with gastrointestinal bleeding.2 This attempt at correlation unveils several shortcomings in palliative care research, including the inherent difficulty with adequately measuring whether palliative care engagement is what led to the reported differences. The central limitation of this study is that it evaluates not the impact of specialty-level palliative care, but rather the outcome differentials based on the presence of a Z-code, which can be utilized by any practitioner.

It is important to distinguish palliative care documentation (i.e., use of Z51.5) as independent from palliative care conversations and from specialty-level palliative care consultation. Z51.5 establishes that an encounter for palliative care was documented, but it does not establish that a specialty palliative care clinician evaluated the patient or link causality to actual palliative care interventions in a patient encounter. Palliative care medical interventions are complex, multidisciplinary assessments that improve quality of life through structural, physical, psychological, social, spiritual, cultural, and ethical aspects of care that are neither linear nor simple to measure.3–5 The authors briefly acknowledge this in their study by stating that they “therefore interpreted the exposure as documentation rather than verified palliative care delivery,” and the maintained findings and causal claims do not account for this meaningful difference. Moreover, the presence of this code does not provide meaningful information regarding the type of care or management provided to patients; instead, it simply reflects documentation tendencies of medical practitioners.

Utilizing mortality rates as a measure of differences in management and patient outcomes when working with patients needing palliative care is a concerning strategy. Patients needing support from a specialty-level palliative care team will inherently have conditions that are life-limiting and thus are expected to have increased mortality; the specialty itself is defined as care for those facing serious illness. As such, mortality rates will be higher in patients with a Z51.5 consult code in their chart. This is supported by the authors’ findings of a difference in mortality of 28.02% vs 1.06% for cases in which Z51.5 was documented. Although they acknowledge a difference in medical presentation between these two groups, the use of statistical analysis without adequate causation is concerning, as this may lead readers to believe palliative care is associated with increased mortality rather than improved quality of life and alignment of treatment with patients’ goals, values, and preferences. In an adequately powered meta-analysis of 43 randomized controlled trials, Kavalieratos et al showed that there is no statistical difference in mortality between patients who were seen by palliative care and those who were not. In fact, there is no significant association between palliative care and survival.6

Additionally, as the authors noted, a patient with a gastrointestinal bleed does not inherently qualify for specialty-level palliative care referral. As such, it would reason that the sample identified for this study is inherently derived from a population that does not routinely need palliative care support and therefore potential changes to management of care would be noncausal. Instead, measuring the use of Z51.5 within this sample serves to reaffirm that patients with more complex and life-limiting medical conditions are more likely to receive palliative care services. This is supported by the authors’ finding that patients were more likely to have a Z51.5 code in their chart if they had a life-limiting illness. As such, identified changes are not specific to the identified sample of patients with a gastrointestinal bleed but rather to overall need for (theoretically) specialty-level palliative care. Patients with gastrointestinal bleeding may be eligible for palliative care, and Rogal et al highlight the benefits for these patients. However, patients with a gastrointestinal bleed as a primary presenting concern are generally not the ideal sample for measuring the role of specialty-level palliative care in care management.7

This study provides an interesting window into the documentation patterns of Z51.5 nationally, but regrettably fails to interpret the effectiveness and impact of specialty-level palliative care utilization. While Z51.5 usage can provide insight into the frequency of provision of specialized services or the types of treatment that may or may not be provided, the statistical analysis lacks substantive insight into what actually goes into palliative care consultation. Future studies with the aim of evaluating the impact of specialty-level palliative care would need to utilize clinical documents, not administrative coding, to more accurately determine services provided and the impact of palliative care interventions conducted with patients. Furthermore, if interested in the use of Z51.5 or documentation patterns, future studies analyzing which providers routinely use this Z code (e.g., palliative care providers, hospitalists, surgeons) and in what settings (i.e., inpatient or outpatient) would be prudent. Palliative care is a complex specialty and is used in documentation differently across practice systems, highlighting that specialty-level palliative care is often overlooked when solely relying on this Z code usage. As Frydman et al note in their study of billing in palliative care, this Z code is highly specific but not sufficiently sensitive, estimated to miss approximately 50% of palliative care services provided.8 The authors’ efforts to try to better understand the impact of palliative care services are commendable and relevant to the current medical landscape. Hopefully, future research will be able to better identify and evaluate the substantive interventions that qualify specialty palliative care.

—Kyle Weinstein, MD, and Derek Chui, DO, FAAFP
Department of Internal Medicine, Division of Supportive Palliative Care,
Baylor University Medical Center, Dallas, Texas, USA
derek.chui@BSWHealth.org
http://orcid.org/0009-0009-8991-5381 http://orcid.org/0009-0002-8183-5300

DISCLOSURE STATEMENT

The authors report no funding or conflict of interest.

References

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