Although the role of advance care planning remains an active topic within the current healthcare reform discussion, no controversy has been articulated about the importance of meeting minimal standards of quality of care for all dying patients. This application of QIs for end of life care to a full cohort of patients dying at a quaternary medical center demonstrated that while many areas of measured care are good, key aspects of care need improvement. The studied hospital is recognized both for intensive utilization at the end of life and positive outcomes among seriously ill patients (16
). This evaluation reveals that most patients dying in the hospital are admitted with end stage disease and the vast majority spend time in the ICU with mechanical ventilation. Four in ten had a decision for ventilation or dialysis to be withdrawn in order to permit death and all but a few had life-sustaining treatment withheld or withdrawn. Thus, in order to die in the studied hospital, it was usually necessary for clinicians and families to make an explicit decision to aim toward less than fully aggressive care. This is an important message for both clinicians (who need to anticipate these decisions and initiate discussions) and policymakers. It also highlights the importance of the identified deficits in goals of care quality.
The most striking area in need of quality improvement is communication between physicians and patients (or their families) as they initiate intensive treatments. Even after 48 hours in the ICU or on the ventilator, more than half of patients had no medical record documentation about goals of care or an attempt to pursue the topic. Whereas medical care should be tailored to achieve patient’s goals and prior work shows that patients’ preferences depend on prognosis (11
), medical care cannot be guided by informed choices absent communication about current clinical status and what course is likely to follow. SUPPORT showed that physicians are often unaware of patients’ preferences and that misunderstanding is related to receiving care inconsistent with goals (9
). This is particularly relevant in the ICU setting where prognosis can change rapidly. Among cancer patients, communication concerning end of life care is associated with important outcomes among dying patients (33
). It should be noted that these QIs by design set a “low bar” for care. Intensive conversations or special interventions are not required to pass the goals of care QIs; simple documentation suggesting that goals of care had been addressed or presence of an advance directive conferred credit. For a seriously ill inpatient cohort such as the one studied, more intensive and serial discussions are warranted (35
). For instance, the 82% of patients for whom there was timely documentation regarding a surrogate decision maker should not be considered adequate; in this population such communication and documentation should occur for every
Although quality scores were high among the pain care indicators, it is important to recognize the low bar represented by these QIs. For example, nearly all patients received an intervention and follow up for a moderate to severe pain complaint. However, passing the measure did not require that the intervention mitigate the pain. Pain assessments prior to death were rarely lacking, most likely because standardized ratings systems for pain assessments facilitate the documentation of pain. In contrast, dyspnea assessments were difficult to identify and capture in the medical records. More standardized assessments for symptoms other than pain may result in better process of care.
Palliative care and ethics consultations and – to a degree – family meetings occurred relatively infrequently given the vulnerable patient population. These interventions have been associated with improved outcomes for patients at the end of life and their caregivers, as well as increased provision of the care processes studied here (36
This study has several important limitations. Most importantly, we evaluated a decedent sample, which may overestimate the level of attention afforded goals of care and symptom assessment among seriously ill inpatients with the potential to die; patients who recover to leave the hospital may be less likely to receive attention to goals and symptoms, although such care processes are important for those individuals as well. This is supported by our sensitivity analysis of patients who were expected to die compared to those who were not. Overall quality scores were similar, but patients who died an expected death received higher quality care for pain. Exploration of quality of care is needed for a cohort of severely ill patients who do not die in the hospital, including those who enter hospice care. Furthermore, it should be noted that these QIs were developed for vulnerable elders and persons 75 years and older. Patients 75 and older received better care for goals of care measures compared to younger patients, but pain and dyspnea care was not significantly different. While early specification of a surrogate decision maker might not be necessary for younger patients admitted to the hospital, preference documentation for patients receiving intensive care and incorporation of preferences into care decisions should be applicable across the age spectrum. Additionally, there was no difference in quality between patients admitted with end stage disease and those without such conditions. This suggests that the deficits in care demonstrated in this analysis reflect general practice patterns rather than clinician response to individual patient prognoses or preferences. However, we only evaluated 16 care processes; additional areas of evaluation, such as other symptoms (i.e. nausea, anxiety) and social and spiritual domains including caregiver support, should be targeted in future work.
This evaluation was undertaken only at a single medical center and needs to be repeated in other venues. This analysis demonstrates the feasibility of this quality of care evaluation; the tools for medical record abstraction are available for others to apply. The medical records evaluated reflect care provided 3–4 years ago; practice patterns may have changed. For example, the institution’s palliative care service has increased its visibility in the interim and care may have already have improved. The findings may not be applicable to community hospitals or academic centers in other regions, but this is an empirical question. Moreover, medical record documentation does not perfectly reflect provision of care (39
), however the quality indicator development process explicitly considered this issue (15
), the deficits in goals of care identified here have been suggested by other work (8
), and prior work has shown that documentation deficiencies were themselves indicative of poor quality of care (42
). It is important to note that we found dyspnea particularly difficult to abstract from the medical record. To ensure we accurately captured quality of care, we performed a supplementary physician implicit chart review that confirmed the lack of documented dyspnea assessment after ventilator withdrawal.
Driven in part by recognition of intensive treatments for seriously ill patients, this rigorous quality of care assessment was undertaken by an academic medical center to better understand the quality of care provided to dying patients. Deficits in communication, dyspnea assessment, AICD deactivation, and bowel regimens for patients on opioids should be targeted for quality improvement. The findings suggest much room for improvement in treating patients dying in the hospital.