Response to Teno et al.: Bereaved Family More Likely to Report “Too Little” Care Than “Too Much” Care at the End of Life (DOI: 10.1089/jpm.2020.0498)

Dear Editor:

We read with interest the mixed-methods study by Teno et al., ¹ recently published in the Journal of Palliative Medicine, which examined the reflections of bereaved families on the amount and nature of care provided to their loved ones in their last month of life. As clinicians working in palliative medicine, we wholeheartedly support research in this important area. We agree that large scale retrospective studies of routine health data are not well placed to make judgments about the appropriateness of clinical interventions for individuals. However, they can raise important questions about the value of high-intensity clinical care toward the end of life, which prospective interview-based studies can then address.

We believe, though, that it is oversimplistic to view the study's findings through the prism of “too much” care versus “too little” care, without better clarity on what this does and does not mean.

We would argue that care is not synonymous with clinical treatment or intervention. The domains of good (palliative) care around which the study's questionnaire is aligned highlight this distinction. It is surely the case that for any person, dying or otherwise, there is always a risk of “too much” treatment, such as when treatment is at odds with patient preference and/or does not offer benefit. Indeed, Donabenian's seminal work on quality and value in health care defines a “point of optimality” beyond which treatment harm begins to outweigh benefit. ² Care, though, should not be confined by these limits. It is true that a person can receive “too little” care but can they really receive “too much”? Some have even suggested that the relationship between care and treatment is inverse toward end of life and that less treatment should mean more care. ³

We also believe that the study's findings do not belong within the broader debate on “too much” medicine. Proponents of this agenda champion value in health care and exposing the hidden harms of overdiagnosis and overtreatment, ⁴ a cause particularly pertinent in the last months of life, where use of nonbeneficial treatments can be widespread. ⁵ The findings here reveal a strong correlation between bereaved relatives' beliefs that their loved ones received “too little” care and perceived failings in several key dimensions of (palliative) care including sensitive communication, symptom control, and dignity and respect. The conflation of this with low levels of aggressive medical intervention (such as intensive care unit admission at the end of life) is unfounded. Similarly, it seems unlikely that the minority of respondents who believed that their relatives received “too much” care would have been referring to “too much” good (palliative) care of the kind described in the survey domains.

Clearly, the study's identification of widespread perceived unmet needs is a cause for great concern and one would hope that health and care systems will act in response. To continue on the theme of value though, we would argue that the study's findings have greater currency in highlighting where improvements are needed across all settings of care than they do in the unrelated debate around nonbeneficial interventions.