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To explore norms of decision making regarding life-sustaining treatments (LSTs) at two academic medical centers (AMCs) that contribute to their opposite extremes of end-of-life ICU use.
We conducted a 4-week mixed methods case study at each AMC in 2008-2009 involving direct observation of patient care during rounds in the main medical ICU, semi-structured interviews with staff, patients, and families, and collection of artifacts (e.g., patient lists, standardized forms). We compared patterns of decision making regarding initiation, continuation, and withdrawal of LST using tests of proportions and grounded theory analysis of fieldnote and interview transcripts.
We observed 80 patients (26 [32.5%] ≥ 65) staffed by 4 attendings, and interviewed 23 staff and 3 patients/families at the low-intensity AMC (LI-AMC), and observed 73 patients (26 [35.6%] ≥ 65) staffed by 4 attending physicians and interviewed 26 staff and 4 patients/families at the high-intensity AMC (HI-AMC). LST initiation among patients > 65 was similar, except feeding tubes (0% LI-AMC vs. 31% HI-AMC, p=.002). The LI-AMC was more likely to use a time-limited trial of LST, followed by withdrawal (27% vs. 8%, p=.01) and to have a known outcome of death (31% vs. 4%, p<.001). We identified qualitative differences in goals of LST, the determination of “dying,” concern about harms of commission versus omission, and physician self-efficacy for LST decision making.
Time-limited trials of LST at the LI-AMC and open-ended use of LST at the HI-AMC explain some of the AMCs’ nationally-profiled differences in end-of-life ICU use.
Despite decades of documentation in the literature[1-5] and important implications for the efficiency and equity of health care[6-8], the non-health causes of variations in volume and intensity of medical treatment remain elusive. The many factors correlated with volume and intensity range from regional supply[9-15] and market characteristics[16, 17] to structural hospital [18-24] and physician characteristics.[25-33]
Recent U.S. discourse has focused on variations in end-of-life treatment intensity between academic medical centers (AMCs) with similar resources and repute as a cause for alarm.[34, 35] Differences in use and withdrawal of life-sustaining treatments (LSTs) in the intensive care unit (ICU) likely contribute to these variations[36-40], yet little is known about the norms of decision making underlying these differences.
This paper describes LST decision making in the medical ICU of two U.S. tertiary care AMCs in the same state and health care system that are oft-cited archetypes of AMCs on opposite ends of the spectrum of end-of-life treatment intensity.
We used 2001-2005 Dartmouth Atlas Medicare claims measures  to purposively sample a low-intensity (LI) AMC and high-intensity (HI) AMC in the same state and health care system (Table 1, top panel), then confirmed differences in LST use in the ICU using 2004-2007 Medicare claims (Table 1, bottom panel).
At each AMC, we recruited via e-mail the attending physicians who were scheduled to be on service during our site visit and consented them to shadow observation and interview. We recruited other clinicians for interview, including nurses, residents, fellows, and consultants involved in the care of sampled patients, via direct contact in the unit, and recruited clinical and administrative leaders involved in policymaking via telephone or e-mail.
Under a waiver of informed consent at each AMC we observed rounds and other clinical decision making for all adult patients staffed by shadowed attending physicians for 8 hours/day for 4 consecutive weeks. Exclusion criteria included age < 21, prisoners, legal concerns (e.g., assault), or opting out. We sampled 5 patients (or their proxies) to complete an interview if the patient met three additional inclusion criteria: 1) age ≥ 65; 2) English-speaking; 3) ≥1 or more life-limiting chronic illnesses [43, 44], maximizing heterogeneity by race and chronic illness.
A nurse (JAT), a medical sociologist (KLR), and a physician (AEB) took field-notes daily during observation of rounds, ICU team and family meetings, and bedside clinical care to document verbal and non-verbal communication, focusing on the processes of LST decision making. We conducted informal interviews with health care providers, patients, or patients’ family members in the unit as the need arose. We dictated these notes daily, then transcribed and edited them for clarity. We conducted formal audio-recorded semi-structured health care provider, clinical leader, and administrative leader, patient, and family member interviews. Finally, we collected artifacts at each institution related to decision making, including institutional policies, standing order sets related to LSTs, and informational brochures designed for patient/family members.
We followed the “editing” approach by Crabtree and Miller designed for qualitative analysis in the medical setting. To begin, a multidisciplinary team of study investigators (AEB, KLR, JAT, RMA) conducted iterative close readings of field-notes, interview transcripts, and policy artifacts to identify emergent concepts, categories, and relationships in the data and to develop a comprehensive coding scheme. Two study investigators, including the nurse (JAT) and a qualitative methods expert (SLZ) who was not involved in data collection and was blinded to AMC identity and end-of-life treatment intensity, separately coded one-quarter of the transcripts using Atlas.ti 5.2 (Scientific Software, Berlin, Germany ). Intercoder kappa scores were 0.76 and above, indicating “substantial agreement.” The nurse investigator used the final coding scheme to code 100% of the documents. We then systematically analyzed patterns in the distribution and relationships of emergent concepts and categories within each individual AMC. Finally, we performed “member checking” at each study AMC.
The LI-AMC had 550 licensed beds, of which 60 were ICU beds (9:1 ratio). The study ICU was a 16-bed mixed medical-surgical co-managed/semi-open unit staffed by an anesthesiology or pulmonary critical care attending on one-week rotations.
The HI-AMC had 425 beds, of which 108 were ICU beds (4:1 ratio). The study ICU was a 24-bed medical closed ICU staffed by two pulmonary critical care attending physicians who split the unit during 2-week rotations.
At the LI-AMC we shadowed 4 (100%) attending physicians, conducted semi-structured formal interviews with 12 providers and 11 clinical and administrative leaders, observed 80 patients on rounds (of whom 26 (32.5%) were ≥ 65 years of age), and interviewed 3 of 5 purposively sampled patients/proxies (Figure 1A). At the HI-AMC we shadowed 4 (100%) attending physicians, conducted semi-structured formal interviews with 15 providers and 11 clinical and administrative leaders, observed 73 patients on rounds (of whom 26 (35.6%) were ≥ 65 years of age), and interviewed 4 of 5 purposively sampled patients/proxies (Figure 1B). The age-eligible patients at the LI-AMC were less commonly admitted from long-term care facilities, had shorter length of ICU stay, received fewer feeding tubes, typically received time-limited trials of LST, and were more likely to have an observed outcome of death during the observation period (Table 2).
Drawing on the qualitative data, decision making regarding the use of LST differed between the two AMCs in many implicit and explicit ways, including goals of LST, determination of when a patient is “dying,” concern about harms of commission versus omission, and physicians’ self-efficacy for LST decision making (Table 3). 21/80 (26%) of observed cases at the LI-AMC and 55/73 (75%) at the HI-AMC contributed coded data to the identification of these themes, with 10 patients at the LI-AMC and 14 at the HI-AMC who were age ≥ 65 years old and received LST without a rapid recovery to discharge contributing most densely (Table 2).
At the LI-AMC, providers identified goals of treatment before initiation of a LST. A dominant theme was that an LST must be a “bridge to something;” it was the means to an end (recovery). We frequently observed explicit time-limited trials of LST. When discussing whether honor the family’s request to extend a time-limited trial of continuous veno-venous hemofiltration (CVVH) for a middle-aged Middle Eastern man with multi-system organ failure (MSOF) ineligible for the liver transplant he required to recover, the consulting nephrologist said: “It [CVVH] is a means to no end.” The fellow explained: “The family wanted to continue without a clear endpoint. Since we decided on no transplant we were kind of dialyzing him to infinity and the guy was not going to get any better.” For patients who might plausibly survive the ICU stay with LST, providers directed surrogates to focus on the patient’s long-term treatment goals (Table 3).
At the HI-AMC, in contrast, we frequently observed open-ended use of LST. The goals of LST were to meet narrow physiologic objectives or avert death in the ICU; it was an end in itself. Although we occasionally heard the critical care attendings asking questions about goals of LST on rounds, the answers to these questions by housestaff were framed in the short-term. For example, when discussing the continuation of CVVH for a middle-aged black woman ineligible for the heart-lung transplant she required to recover, the critical care attending said to the residents “She was here when I was on service 3 weeks ago. We can’t go on indefinitely. What’s the endpoint?” to which the fellow replied “Her dry weight.” Housestaff interpreted written advance directives to identify narrow treatment preferences, which substituted for goals. When discussing the 69 year-old white woman with metastatic cancer and limb-threatening cellulitis, sepsis, and respiratory failure, the attending asked “What is the end game?” to which the fellow replied, “There is an advance directive. She wants everything to be done, but only if it’s a temporary measure.” The intern’s note, recopied verbatim daily, read: “Wait a few days to readdress advance directive type issues with the family.” Goals were not readdressed with the family until the patient was intubated, extubated, and reintubated over 20 days.
At the LI-AMC, many patients were perceived as dying and there was seldom disagreement among team members or consultants. All of the providers agreed that the middle-aged Middle Eastern man ineligible for the liver transplant he required to recover was dying. Similarly, a 67 year-old black man with metastatic neuroendocrine tumor, an 81 year-old Asian man with metastatic gastric cancer, and a 51 year-old white man with advanced glioblastoma were considered as dying because they had poor prognosis solid tumors and at least one organ failure. Determination of dying also included implicit and explicit valuations of quality of life if LST were continued (Table 3).
At the HI-AMC, there was often disagreement between services and even ambivalence on the part of individual critical care attendings regarding the determination of dying. In the case of a 69 year-old white woman with metastatic pancreatic cancer the critical care attending said of the oncologists: “They give this crazy prognosis. I don’t trust these guys.” Although critical care attendings attributed prognostic over-optimism to other services, we also observed instances of their own ambivalence, demonstrated by frequently vacillating between discussing patients’ longer term prognosis from the underlying condition and their shorter term prognosis for survival to discharge (Table 3).
At the LI-AMC there was a particular focus on avoiding harms of commission. For example the team expressed concern that CVVH could be doing “more harm than good” for the middle-aged Middle Eastern man ineligible for the transplant he required to recover, since CVVH filter clogging was “bloodletting” and transfusion was impossible due to alloantibodies. For the 51 year-old white man with glioblastoma, poor neurologic function, and failure to wean from mechanical ventilation, there was resistance to performing a tracheostomy because of an implied concern about transforming him from a state of acute critical illness to chronic critical illness. As one critical care attending asked during social service rounds: “Sure, we could trach him, but what then?” For an 81 year-old white man with MSOF after complications of elective surgery at an outside hospital, the team was preoccupied with the potential harm of providing LST against his will (Table 3).
At the HI-AMC, concerns about harms of commission were raised by critical care attendings, but usually only as frustrated complaints about other providers’ decision making (Table 3). Harms of omission loomed larger, as an intern explained: “You know because we have the resources, the chance that we miss something would just make us feel terrible. You know ‘oh we could have done that and then we would’ve known, and then …’” This manifested in the decision to complete treatment for an iatrogenic pneumothorax prior to initiating comfort measures for an 84 year-old white woman with dementia who was inadvertently resuscitated in the ED despite her DNR order (Table 3).
At the LI-AMC, we observed a high level of self-efficacy for LST decision making among the intensivists, even though they were not technically the primary service. As one explained: “There’s a lot of interest in decision making at the end of life…a lot of attention to engaging patients in thinking about whether aggressive care is the right way to go.” Providers viewed family requests for continued LST in situations of low anticipated benefit as part of the normal and expected evolution of a process that would take time to work through. Typically the intensivists and the primary team worked collaboratively with each other towards a consensus with the patient’s family. Although negotiated solutions were the norm, we observed one stalemate and one unilateral decision to withdraw “medically” against the family’s wishes on day 6 of admission for the middle-aged Middle Eastern man ineligible for transplant.
At the HI-AMC, providers externalized the locus of control to patients, relatives, referring providers, and specialists who they believe expected LSTs. Instead of seeing family’s requests for continued LST of low anticipated benefit as part of a normal process, they perceived it as a treatment mandate. One member of the clinical leadership hypothesized that the source of patients’ expectations were doctors themselves: “When you’re in an environment where it’s also very common to follow a very aggressive mode, a lot of patients will be swept up into that and begin to believe that that’s their goal as well.” Consulting specialists were perceived by the critical care attendings to control LST decision making, even though critical care was technically primary in the closed ICU. As one attending repeatedly said each time he complained about other services’ decision making: “but I’m not going to tell the [service] what to do.” Also, we repeatedly heard providers attribute demands and expectations to families, sometimes based upon cultural stereotypes, that we did not corroborate through observation and interview (Table 3). The degree of control ceded to patients and families disturbed the durable power of attorney for health care of the 84 year-old woman with dementia who was inadvertently resuscitated in the ED: “I was always the one who got to flip the switch. With all the information, do you want to go this way or that way? I got to go this way or that way…It is not something I want to do again.”
The origin of the interest in end-of-life decision making at the LI-AMC was attributed to an influential internist and ethicist starting in the 1980s. A homogeneous approach is promoted by retention of trainees as faculty, as one fellow noted: “This is a very inbred institution. You know pretty much every attending actually was a fellow here.” Strong social norms protected against countervailing influences, as described by one resident “I think that the personalities of the people who are extremely aggressive … really are not influential … because [they] haven’t really made any kind of reasonable case either for extensive use of that life-support or for the thought behind it.”
The origin of the approach to end-of-life decision making at the HI-AMC was attributed to the institution’s status as a referral center attracting patients expecting treatment other centers would not provide, such as transplants for patients over 65. Sunk costs motivated continued investment: “We continue very aggressive care to try and sustain their life in hopes you can reverse the process…because you have invested a lot of not only time, a lot of money, a lot of resources in making sure that they got the transplant.” Norms of treatment for complex referral populations created spillover effects for typical elderly admissions: “Because of our patient population here, the physicians who take care of these patients are highly aggressive and is it not our style to pull back and let people go. So typical bread and butter patients are treated very aggressively, right or wrong … it’s just automatic in your training you know, that you just keep going.”
In this case study of two AMCs in the same state and health system that are oft-cited archetypes of AMCs on opposite ends of the spectrum of end-of-life treatment intensity, we observed substantial differences in LST decision making in the medical ICU. At the LI-AMC, LST was a means to an end whereas at the HI-AMC, it was an end in itself.
At the LI-AMC, time-limited trials of LST guided by provider-defined treatment goals (e.g., organ function recovery) was the default. When these goals weren’t met, withdrawal often involved negotiation with families who sometimes pressed for continuation, a process that providers perceived as a natural evolution of the encounter that they were confident in managing. Management involved redirection, and occasional circumnavigation, of family preference for the patient to survive the hospitalization to considerations of longer-term survivability and functional outcomes. The origin of these norms may be historical accident. We did not directly identify the sanctions reinforcing these norms, although we did observe the director of adult critical care services on the unit every day asking whether each patient still needed to be in the ICU, likely motivated by scarcity given the 1:9 ICU-to-ward bed ratio. Moreover, variation in approach to end-of-life decision making was minimized by hiring faculty who also trained at the AMC, among whom the norms had been internalized as values.
At the HI-AMC, open-ended LST guided by narrow physiologic objectives and the goal of survival to discharge was the default. These goals arose from specialist input and perceptions regarding patient treatment preferences based on assumptions, stereotypes, and narrow interpretation of written advance directives more often than facilitated conversations about patient values considered best practice.[47, 48] Withdrawal of LST, which was rare, appeared based on “physiologic futility” in the face of inexorable deterioration despite maximal LST, since critical care physicians and specialists didn’t agree that the patient was dying before that. This did not manifest as open conflict, but instead frustrated passivity on the part of critical care providers embodied by frequent complaint about specialist decision making, suggesting a “learned helplessness” based on prior reprisals. The origin of these patterns is unclear, although they may be promoted by the comparatively resource-rich 1:4 ICU-to-ward bed ratio and an organizational identity defined by doing things that others will not.
This is the first study of its kind to systematically compare the norms of LST decision making between 2 hospitals based upon their known end-of-life treatment intensity. Prior studies have found structural factors, such as bedsize, associated with hospital [24, 49] and ICU-level  variation and others have serendipitously documented differences in norms of LST decision making between ICUs purposively sampled on other criteria [51-53] In contrast to Cassell’s findings, the closed administrative model of staffing in the HI-AMC was not associated with greater control over LST decision making, perhaps because informal norms maintained the power of specialists over critical care providers despite formal norms regarding the attending of record.
Although our findings are not generalizable to other high- and low-intensity AMCs, they are robust, having followed best practices in qualitative research, including theoretical sampling; multiple coding; data, investigator, and methodological triangulation; and respondent validation. Limitations include exclusively focusing on decision making conditional upon admission to the ICU, although outpatient and ICU admission decision making result in differences in ICU case-mix (see Online Supplement), and conducting relatively few patient/family interviews.
In conclusion, we are the first to describe behavioral norms that underlie differences between 2 high-profile AMCs’ patterns of end-of-life treatment intensity. Future research should expand the AMC sample and explore the mutability of norms in response to policy initiatives designed to reduce variation.
Study Advisory Committee: Derek C. Angus, Judith R. Lave, Mary Elizabeth Happ, Megan Crowley-Matoka, Jonathan Skinner, Denise Anthony, Denise Rousseau, Sharyn Sutton; Dartmouth Atlas: Elliott Fisher, Yunjie Song; Institutional contacts and investigators; Michael Gropper, J. Thomas Rosenthal, Rajan Saggar; Other intellectual contributions and research assistance: Margaret Crighton, Courtney Sperlazza, Elan Cohen.
Funding: This work was supported by the National Institute for Nursing Research (R21NR010265).
CONTRIBUTIONS Obtaining funding (AEB), Conception and design (AEB, RMA), data collection (AEB, JAT, KLR), data analysis (AEB, JAT, KLR, SLZ, RMA), manuscript drafting (AEB), critical review and revision of manuscript (JAT, KLR, SLZ, RMA). Dr. Barnato 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.
Disclosure: There are no financial relationships with any organizations that might have an interest in the submitted work in the previous three years and no other relationships or activities that could appear to have influenced the submitted work.
Disclaimer: The views expressed in this article are those of the authors and do not necessarily reflect the position or policy of the Department of Veterans Affairs or the United States Government.