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.
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 (firstname.lastname@example.org).
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.
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.
Hua M, Wunsch H. Placing Value on End-of-Life Care—Is It Time for a New Taxonomy? JAMA Netw Open. 2019;2(11):e1914466. doi:10.1001/jamanetworkopen.2019.14466
Customize your JAMA Network experience by selecting one or more topics from the list below.