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Patients in American hospitals receive intensive medical treatments. However, when lifesaving treatments are unsuccessful, patients often die in the hospital with distressing symptoms while receiving burdensome care. Systematic measurement of the quality of care planning and symptom palliation is needed.
Medical records were abstracted using sixteen Assessing Care of Vulnerable Elders quality indicators within the domains of end of life care and pain management designed to measure the quality of the dying experience for adult decedents hospitalized for at least 3 days between April 2005 and April 2006 (n=496) at a university medical center recognized for providing intensive care for the seriously ill.
Over half of the patients (mean age 62, 47% female), were admitted to the hospital with end stage disease and 28% were age 75 or older. One third of the patients required extubation from mechanical ventilation prior to death and 15% died while receiving CPR. Overall, patients received recommended care for 70% of applicable indicators (range 25%–100%). Goals of care were addressed in a timely fashion for patients admitted to the ICU approximately half of the time, while pain assessments (94%) and treatments for pain (95%) and dyspnea (87%) were performed with fidelity. Follow-up for distressing symptoms was performed less well than initial assessment and 29% of patients extubated in anticipation of death had documented dyspnea assessments.
A practical, chart-based assessment identified discrete deficiencies in care planning and symptom palliation that can be targeted to improve care for patients dying in the hospital.
Patients in American hospitals receive intensive medical treatments (1,2). Given the aggressiveness of medical care provided to inpatients who are seriously ill and approaching death, it is not surprising that medical care provided during the last year of life accounts for 10–12% of the U.S. healthcare budget and 27% of Medicare expenditures (3,4).
Despite this intensive resource use, studies suggest that when lifesaving treatments are unsuccessful, hospitalized patients often die with distressing symptoms. Studies of patients who died in the hospital find that pain, dyspnea and restlessness/agitation are prevalent before death (5,6,7). Furthermore, persons dying in the hospital often receive burdensome care immediately before death that may not match patient preferences. In the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT), 38% of patients spent at least 10 days in an ICU prior to death and physicians commonly misunderstood patients’ resuscitation preferences (8,9). Interviews conducted with family members of a nationally representative sample of patients who died in the hospital revealed that half perceived inadequate physician contact and one quarter reported concerns about physician communication during the hospitalization (10).
Studies show that while many patients want high intensity care aimed at improving survival and quality of life, when treatment fails patients and families value other outcomes including symptom control during the dying process. In one survey evaluation, many adults rated certain clinical outcomes (severe pain, severe stroke, dementia, permanent coma) as worse than death (11). In another study, patients were less likely to desire aggressive treatments if their outcome would be more impaired than their current health state (12). Patients also would prefer to die at home (13). Despite this, half of patients die in the hospital and when patients are admitted to hospice they often are close to death (14,15).
These data suggest that patient goals for medical care and careful weighing of the burdens and benefits of treatments in the light of clinical realities may not always drive the care that seriously ill hospitalized patients receive. However, there has not been a systematic, clinically detailed measurement of the quality of care planning, palliation and symptom management among dying inpatients. We applied quality indicators (QIs) from the Assessing Care of Vulnerable Elders (ACOVE) set to measure the quality of care provided to a decedent cohort at the UCLA Medical Center, a quaternary care university hospital with 600 beds and a large transplant program, recognized for providing aggressive care toward the end of life in order to identify areas for quality improvement (16).
We used ACOVE-3 QIs from the end of life care and pain management domains that were developed based on the scientific literature and expert consensus methods to evaluate the medical care delivered to all dying patients during their terminal hospitalization (17). Although these QIs were initially developed for vulnerable elders, we applied them to the entire decedent sample since these patients are also vulnerable and would benefit from the identified processes of care. Because all patients died before study initiation, the investigation was exempt from IRB review (#G06-09-025-01 exempt).
ACOVE QIs are evidence-based, measures of process of care quality designed to cover the spectrum of care from prevention to treatment and follow-up for vulnerable older persons, including pain management and end of life (17). The ACOVE-3 set of measures contains 392 QIs covering 26 conditions and is designed primarily for medical record abstraction. In prior work, quality of care measured using these measures was linked with improved survival consistent with the Donabedian Quality of Care Framework (18,19). However, the ACOVE QIs aimed at end of life care have not been implemented previously. Conceptually, these process measures link to improved outcomes of quality of death and health related quality of life rather than survival (20).
Among the 29 QIs focused on end-of-life care and pain management, we selected all that could be measured using the inpatient medical record from a terminal hospitalization (21). This included 10 end-of-life and 2 pain indicators, as well as one added measure aimed at implantable cardioverter defibrillator (ICD) use in the dying patient from a related set of QIs developed using identical methods (22). These 13 measures fit into three domains of end of life care: eliciting goals of care, pain assessment and management, and dyspnea assessment and management. Since three of these measures contain two discrete care processes, we describe care for 16 QIs (Table 1).
A decedent sample was selected for this study since we are most interested in quality of care for patients who are very close to death or at high risk of dying. We identified all patients 18 years and older who died during admission to one medical center between April 2005 and April 2006 following a hospitalization for at least 3 days. Of 586 adults who died, 86 died less than three days after admission. Of the 500 adult decedents who died after three or more days, complete terminal hospitalization medical records were available for 496 (99%), who constitute the study sample.
A medical record abstraction tool was developed to collect data describing patients and how they die in the hospital (i.e. demographics, clinical characteristics, life-sustaining treatment decisions) and to collect data elements for the ACOVE end of life and pain management QIs. Information was obtained from the full medical record including the hard copy record, a partial electronic medical record and a nursing electronic record. The abstraction instrument included a medical record abstraction tool, a companion tool containing detailed information on abstraction guidelines and skip patterns, a checklist to guide efficient abstraction, answers to frequently asked questions, and standard medication lists.
Experienced nurse abstractors were trained to use the abstraction tool following a previously used method, which includes intensive training, tandem abstraction and comparison, and reliable abstraction of five testing charts (23). Abstractors participated in bimonthly meetings with discussion of questions and updating of guidelines. Ten percent of medical records were randomly selected to be abstracted a second time by a different nurse. Reabstraction revealed that 92% of QIs were triggered identically (pooled kappa = 0.67) and scoring for identically triggered QIs had 90% agreement (pooled kappa=0.67) (24). In addition, nearly identical QI scores were obtained from the 47 sets of abstracted and reabstracted records (r=0.96).
A patient who was eligible for a QI received a score of 1 for that indicator if they received the recommended care process, otherwise they received a score of 0. For QIs that could be triggered multiple times for a given patient, a score between 0 and 1 was possible. The QIs measured whether advance care planning procedures were undertaken, whether patients participated, when possible, in care decisions, and the approach to pain and dyspnea. If the medical record indicated that the patient refused the care process, the QI was considered to be passed. We identified how many times each quality indicator was triggered in the patient sample and computed the pass rate for each QI by dividing the number of indicators that were passed by the number of eligible patients. We also calculated pass rates for the three QI domains (goals of care, pain, and dyspnea). Analyses were performed with SAS statistical software, version 9.1, Cary, NC, USA.
The ACOVE QIs were developed to be applied to a vulnerable sample of community-dwelling persons age 65 and older and patients 75 years and older (17, 25, 26). We applied these measures to a full inpatient decedent sample. In order to understand whether quality of care was related to the initial vulnerability of subgroups of dying patients, we studied patients 75 years and older compared to younger decedents, patients with and without “end stage disease” on admission, and patients documented to have an “expected death” at least three days before death compared to those without such documentation. We defined end stage disease to include one or more of the following: advanced cancer, end stage pulmonary disease, end stage heart failure, end stage liver disease, end stage renal disease, AIDS, or end stage dementia. We defined “expected death” as any physician documentation that the patient was terminal, had a grave prognosis, was receiving hospice care, had life-threatening disease, or was dying. For these analyses, we computed quality scores at the patient level and compared overall and domain quality of care scores using t-tests between groups.
The analytic sample of 496 decedents had a mean age of 62 years; 47% were female, 62% were white non-Hispanic and 60% were married. Nearly three-quarters of the patients were admitted to the hospital with end stage disease or were age 75 years or older. Forty-five percent of the sample had private insurance as their primary source of payment and 41% had Medicare. Twenty-one percent of decedents had advanced cancer, 16% end stage liver disease, 11% end stage pulmonary disease, 9% end stage renal disease, 6% end stage heart failure, and 1% severe dementia on admission to the hospital. In one quarter of the patients, an organ transplant was considered during the hospitalization: liver (17%), bone marrow (3%), heart (3%) and lung (2%). Eighty-five percent of patients had medical record documentation suggesting that clinicians anticipated the death would likely occur during the hospitalization; 47% had a documented “expected death” 3 or more days before death (Table 2).
The patients had a median hospital length of stay of 15 days (mean 24, range 3–216) with 63% (n=312) hospitalized more than 10 days. Eighty-two percent of patients were admitted to the ICU with a median ICU stay of 10 days [mean 18, range 1–194] and 72% were mechanically ventilated (median ventilation duration 10 days [mean 17, range 1–194]). Thirty-two percent of patients received CPR at least once during the hospitalization and 15% died receiving CPR. Hemodialysis was initiated for the first time during the terminal hospitalization for 33% of patients, 7% had a gastrostomy or jejunostomy tube placed during hospitalization, and 4% had an ICD in place (Table 3).
Eighty-four percent of patients had a do not resuscitate (DNR) order prior to death; 28% of DNR orders were written on the day of death (median time DNR placed before death=2 days). Of the 359 patients receiving mechanical ventilation, 165 (46% and 33% of the full sample) had the ventilator withdrawn to permit death. Among the full sample, 202 patients (41%) had either ventilation withdrawn, a decision to stop hemodialysis, or both, prior to death. Of the remaining 294 decedents, for 207, decisions were made to stop additional blood transfusions, withhold dialysis, withhold or withdraw a feeding tube or limit general aggressiveness of care. Thus, for 409 (82%) of the 496 patients explicit decisions documented in the medical record withheld or withdrew life-sustaining treatments – beyond resuscitation decisions – so that patients could die. Of the 126 decedents considered for organ transplant or re-transplant during the hospitalization, 62 (49%) were removed from transplant consideration prior to death.
Sixty-three percent of patients were visited by a chaplain during the terminal hospitalization. At least one family meeting was documented for 55% of patients. Seven percent of patients had a Palliative care consult and 7% had an Ethics consultation.
The 496 patients triggered 3,086 QIs, of which 2174 were passed (70%, QI range 25%–100%). Patients were eligible, on average, for 6.2 QIs (range 1–13). By domain, the mean quality score for goals of care was 67%, for pain care was 76% and for dyspnea care was 71% (Table 1).
Among the goals of care QIs, patients’ documented preferences for care related to resuscitation status and gastric tube placement were respected with fidelity. Medical record documentation concerning a surrogate decision maker (or a reason why this could not be specified) was completed within 48 hours of admission 82% of the time. However, timely documentation of discussion about patient preferences on admission to the ICU or for those receiving mechanical ventilation occurred less than half of the time. While presence of an advance directive documenting patient preferences would have satisfied this QI, only 18% of patients had an advance directive in their medical record at any point during hospitalization. For patients with cognitive ability, participation in decisions regarding life-sustaining treatment, or documentation about why this was not possible or desirable, was absent for more than half of patients. Patients with AICDs who were expected to die had documentation regarding deactivation of the device only 25% of the time.
As might be expected given an electronic nursing documentation record that elicited responses concerning pain, pain assessment and management were performed consistently with pass rates exceeding 80%. However, only 61% of patients receiving opioid medications had a bowel regimen prescribed or a reason documented why it was not.
Although dyspnea treatments were almost always prescribed for patients undergoing withdrawal of a ventilator expecting death, only 29% of these patients had dyspnea assessments documented. Most patients had dyspnea care for moderate to severe dyspnea documented during the last 3 days of life (87%); however follow-up to ensure that treatments were effective occurred less often (70%).
Overall, patients 75 years and older received slightly higher quality care than younger patients (73% vs. 69%, p=0.03). Older patients received better care for goals of care QIs (77% vs. 65%, p< .0001), but worse care for pain (65% vs. 73%, p=.08) and dyspnea (67% vs. 83%, p=.054). Overall quality scores did not differ between patients who had end stage disease on admission and those who did not (70% vs. 70%, p=0.75) and domain scores also were similar. Patients with documentation of an expected death three or more days before death received similar quality care compared to patients without such chart documentation, overall (70% vs. 69%, p=0.6) and in the goals of care domain (67% vs. 70%, p=0.3), but patients with expected death documentation received better quality pain care (76% vs. 65%, p=.001) (Table 4).
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, 27–29). 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, 30–32), 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, 34). 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 patient.
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 (36–38).
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 (39,40), however the quality indicator development process explicitly considered this issue (15,41), the deficits in goals of care identified here have been suggested by other work (8,9), 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.
Funding/Support: This project was supported by a donation from Mary Kay Farley to RAND Health. Mrs. Farley cares deeply about the topic and encouraged this work. Dr. Walling was supported by National Research Service Award Training Grant T32 PE19001 and the UCLA Specialty Training & Advanced Research Program.
Role of the Sponsor: The funding source had no role in the design, execution, analysis or interpretation of the study or on the decision to submit the results for publication.
Preliminary data was presented at the Society of General Internal Medicine Annual National Meeting in Miami, Florida on Thursday, May 14 and received a Geriatric Abstract Award.
Author Contributions: Dr. Walling had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.Study concept and design: AMW, SMA, KAL, CPR, TB, KLK, NSW
Acquisition of data: AMW, CPR, TB
Analysis and interpretation of data: AMW, SMA, KAL, CPR, NSW
Drafting of the manuscript: AMW, NSW
Critical revision of the manuscript for important intellectual content: SMA, KAL, CPR, TB, KLK
Statistical analysis: AMW, SMA, KAL, NSW
Study supervision: AMW, SMA, KAL, CPR, TB, KLK, NSW
Administrative, technical, or material support: AMW, SMA, KAL, CPR, TB, KLK, NSW
Financial Disclosures: None.
Additional Contributions: This project benefited from the guidance of Drs. Robert Brook, Thomas Rosenthal and Thomas Sibert. Myrt Yamamoto expertly led the team of nurse abstractors including Linda Oshinomi, Angelica Padua-Laus, Nancy Larkin and Anna Dickey. Drs. Ron Hays, Robert Kaplan and Martin Shapiro provided valuable advice. We recognize the project management of Caren Kamberg and the technical assistance of Patricia Smith, Jenny Kotlerman, Mark Lucas, and Victor Gonzalez.
No author reports any conflict of interest with this paper.