In this issue of JAMA, Lee and colleagues (1) examine the association between Physician Orders for Life-Sustaining Treatment (POLST), which involve portable medical orders that document treatment limitations for pre-hospital emergency care, and limiting overtreatment at the end of life. The authors studied adults with chronic life-limiting illnesses who were hospitalized within the last six months of life and who had completed a POLST prior to their last inpatient admission. Among 1818 patients enrolled, 656 (36%) had POLST orders for “full treatment,” and 1162 had orders for either “limited additional interventions” (n=761; 42%), or “comfort measures only” (401; 22%). Among the combined latter two groups, 472 (41 %) were admitted to the Intensive Care Unit (ICU), 436 (38%) received POLST-discordant intensive care, and 204 (18%) received POLST-discordant life-sustaining treatments, defined as mechanical ventilation, vasoactive infusions, new renal replacement therapy, or cardiopulmonary resuscitation. Patients with cancer or dementia were less likely to receive POLST-discordant intensive care, whereas patients hospitalized for traumatic injuries were more likely to receive POLST-discordant intensive care. These results are sobering.
The authors conclude that patients with treatment limiting POLSTs hospitalized near the end of life often receive care that seems inconsistent with their preferences. However, certain aspects of the study design may have contributed to overestimation of the number of patients at the end of life who received care not consistent with their wishes. The investigators only included patients with POLST forms who were hospitalized within six months of their death, such that those who died without being hospitalized were not included, even though their care may have been aligned with their preferences. In addition, patients with serious illness who were hospitalized, received POLST-concordant care, but did not die within six months were also not included.
Advance care planning for treatment near the end of life involves several challenges. The Patient Self-Determination Act was enacted by Congress in 1990 to address the concern that patients were receiving care at the end of their lives that was not consistent with their wishes. Today patients have a variety of options to facilitate advance care planning, including the ability to create POLST forms to limit the use of life-sustaining treatments in the out-of-hospital setting. POLST forms, living wills, and other types of instructional advanced care planning all share at least three common challenges related to the fact that they depend on predictions made at one point in time to determine what will happen at a future time.
The first challenge is that the clinical scenario encountered must be very similar to what the patient considered when completing the POLST. When patients indicate preferences about specific interventions on the POLST, their choices are often based on certain assumptions about the outcomes that would result from that decision. Patients elect to forgo therapies to avoid certain outcomes, such as prolonging a poor quality of life because of severe cognitive impairment or physical disability (2). However, an intervention that leads to a poor outcome when used within a trajectory of progressive chronic illness may have a better outcome when used to treat conditions that may be reliably reversed without excessive burden. This may explain, for example, the finding that POLST-discordant care in the study by Lee et al was more common among patients hospitalized for traumatic injuries, which may sometimes be more easily treated compared with progressive chronic illnesses.
Second, POLSTs will not reflect the patient’s preferences if these preferences have evolved and changed over time. This is a challenge to all forms of advance care planning because of the well-documented problems patients have in imagining how they might adapt to future states of health they currently perceive to be unacceptable (3). Some of the observed POLST-discordant care reported in the current study may have been related to surrogates who requested more aggressive care based on their perceptions of how the patient’s preferences may have changed over time.
Third, prognostic uncertainty may make it difficult for surrogates and clinicians to determine which strategies are most consistent with the patient’s goals at the outset of an illness episode. The finding in the study by Lee et al that discordant care was less likely in patients with cancer and dementia may be explained by the fact that these diagnoses are associated with less prognostic uncertainly.
In more uncertain situations, an effective approach often involves giving patients a trial of treatment. The use of mechanical ventilation or circulatory support for a limited period of time may give decision-makers the information they need to determine whether the clinical problem (such as respiratory distress) can be quickly reversed with minimal burden, or whether it is the beginning of a relentless decline. In the study by Lee et al, the number of ICU admissions that included a trial of treatment that may have been discordant with the patient’s POLST was not reported, although use of these treatments may have been helpful in giving confidence to the decision that withdrawal of treatment was most consistent with the patient’s goals of care.
These challenges reinforce the importance of understanding the optimal use of POLST forms in the setting of care at the end of life. These forms are most valuable as a means to provide a set of instructions that can be used across care settings in emergency situations when there is no opportunity for additional deliberation about treatment decision making. The POLST should be seen as advisory regarding the patient’s wishes, although at the time of hospital admission clinicians have an obligation to clarify the orders with the patients whenever possible, to interpret the POLST within the context of the patient’s actual circumstances at the time clinical decisions need to be made, and to corroborate these decisions with the patient’s surrogates. This process may result in appropriate changes to orders documented in the POLST, and the patient may receive either more or less aggressive care.
While some of the POLST-discordant care reported in the study by Lee et al may have been consistent with the patients’ goals, as the authors assert the study provides a strong signal that many patients received overtreatment at the end of life, defined either as treatment which is unwanted or treatment that is unlikely to be beneficial. Efforts to mitigate the risk of overtreatment begin by educating and counseling the patients. Many initiatives are focused on ways to better inform patients about the anticipated trajectories of their conditions and the full range of outcomes associated with life-prolonging treatments, including those related to function and cognition. In addition to educating patients using data from outcome studies, creative ways of presenting this information through the use of patient videos or narratives have been developed to communicate this information in ways that are more accessible and meaningful to patients and families (4).
In addition to patient education, surrogates also need support and assistance in overcoming the documented challenges of serving as a surrogate decision maker. Current strategies and tools for promoting engagement in advance care planning emphasize the central importance of improving communication and understanding between patients and their surrogates. These interventions have been shown to improve surrogates’ knowledge of patients’ preferences and the likelihood that these preferences will be honored (5).
While trials of treatment can be an effective strategy for addressing prognostic uncertainly, approaches to the withdrawal of treatment in the ICU are highly variable (6), suggesting that difficulty in stopping interventions serves as a barrier to the use of time-limited trials in addressing prognostic uncertainty. Early involvement of palliative care for patients with critical illness may be one approach to help optimize the use of such trials (7).
Even with the best of counseling, some patients will refuse any limitations of treatment – 36% of the patients in the study by Lee et al had POLST forms requesting “full treatment,” presumably including admission to the ICU, mechanical ventilation, and CPR, if necessary. While receipt of these therapies would be considered POLST-concordant care, clinicians sometimes object to providing care that they perceive will be non-beneficial or even harmful. These conflicts between clinicians and patients or their surrogates are a common problem in ICU care, and are seen as a major contributor to distress and burnout among clinicians (8). While this issue was not addressed in the current study, guidelines endorsed by multiple clinical societies have been developed and define a pathway for resolving these conflicts through a fair process of conflict resolution, including offering to transfer the patient to a setting that is willing to provide the requested care, or facilitating review of the decision, typically through a judicial process. (8).
Lee and colleagues have provided important new information about the relationship between POLST forms and overtreatment of patients at the end of life. These insights will assist clinicians in developing strategies to help ensure that patients hospitalized near the end of life receive only those treatments that are both desired and beneficial.
Acknowledgments
Dr. Fried acknowledges support from two grants: P30AG21342 and R01NR016007
Contributor Information
Robert D. Truog, Center for Bioethics, Harvard Medical School, Department of Anesthesiology, Critical Care, and Pain Medicine, Boston Children’s Hospital.
Terri R. Fried, Clinical Epidemiology Center, VA Connecticut Healthcare System and Department of Internal Medicine, Yale School of Medicine.
References
AU: references #2-#5 are quite dated (all over 10 years old); please update to provide more recent references, if possible
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