Clinician Perspectives on Challenges to Patient Centered Care at the End of Life

Setting

The Lexington Veterans Affairs Medical Center (Lexington VAMC) is an accredited 199 bed hospital that provides acute medical, neurological, surgical, and inpatient psychiatric services. At the time of this study, local policies include a 48-hr expiration of DNR orders written by medical residents without an attending physician’s co-signature. Local practice also uses the term “do not intubate” (DNI), designed to indicate when patients are willing to have some aspects of resuscitation, but do not want endotracheal intubation.

Procedures

This study was conducted by the Lexington VAMC’s preventive ethics team, an interdisciplinary group of health care professionals organized to identify ethical challenges and explore solutions to address ethical dilemmas. The preventive ethics team includes administrative and clinical personnel, including the intensive care unit (ICU) nurse manager, the emergency department nurse manager, and the director of hospice and palliative care. End-of-life patient care was selected as a focus by leadership due to anecdotal evidence that some patients were receiving end-of-life care they did not wish to receive and concern that there might be confusion regarding appropriate medical care for inpatients with DNR orders.

The Lexington VAMC’s preventive ethics team delivered a survey to 72 medical center employees—15 physicians, 48 nurses, 4 social workers, and 5 respiratory therapists—to understand barriers to patient expression of end-of-life wishes and to deliver medical care consistent with those wishes. These four groups of clinicians were selected as those most likely to be involved with code status discussions. The clinical members of the preventive ethics team each identified participants in their areas; thus, the diverse makeup of the team resulted in a range of participant experiences and perspectives. After reviewing the 72 completed surveys, the team believed informational redundancy, for example, surveys were no longer providing new information, had been achieved (Patton, 2002). Survey questions encouraged open-ended free responses and explored clinician understanding of DNR orders, Advance Directives, and code status discussions with patients. Survey questions followed a strengths, weaknesses, opportunities, and threats (SWOT) framework; respondents were also asked about what worked well and opportunities for improvement with current DNR orders (Christiansen, 2002). Given the qualitative, open-ended nature of these questions, we did not engage in any formal pilot testing; however, the interdisciplinary preventive ethics team involved in this project reviewed the questions for face validity to ensure that the appropriate topics were included. Approval for this research was obtained by the Lexington VAMC Institutional Review Board.

Data Analysis

All survey responses were typed and compiled into a single Word document. The first author analyzed the surveys through constant comparative analysis, using multiple iterations of coding and sorting methodologies to identify themes (Fram, 2013). Rigor was enhanced through detailed examination by the second author. Both of these authors had extensive training and experience with qualitative research methods. Inconsistencies in interpretation were discussed, and differences in interpretations were reconciled by consensus agreement. The project team reviewed the resulting document to address coding ambiguities.

Inconsistencies in the Timing and Quality of Code Status Discussions

Respondents recognized shortcomings in the consistency and quality of code status discussions. Regarding consistency, one nurse explained that code status “should be discussed upon hospital admission, but a lot of times it’s not until conditions deteriorate.” Another nurse shared her experience of code status discussions not occurring consistently on admission: “Sometimes the patient arrives [on the floor] without a code status. The person may indeed wish to be a DNR but the issue is not addressed upon admit.” One physician offered, “Code status is required in the ED physician note for all patients admitted to the hospital. That happens most of the time.” One nurse explained the need for prompt code status discussions: “No one is addressing [code status]—until it has to be addressed . . . Should be done upon entry to ED because don’t know if [the patient is] going to ‘circle the drain.’” Others recognized that discussions of code status should occur even prior to hospital admission, “by primary care at regular intervals . . . but I don’t think that is happening” (MD). Instead, one nurse explained, code status discussions occur “when patients are critical and not in a state of mind to make decisions appropriately.”

Many respondents questioned the quality of code status discussions. One nurse expressed her concern: “I don’t feel the whole picture is presented to the patient.” A physician indicated that “the quality of that discussion is questionable, especially if occurring in July via a new intern!” One respiratory therapist suggested, “We should be more direct in dealing with patients likely to have poor outcomes. We should give them all the facts as soon as possible so they can make informed decisions about their care.” One nurse suggested, code status “needs to be explained more clearly to family.”

The need for higher quality code status discussions was evidenced by the perception that patients and families were unclear about the meaning of DNR status. One physician indicated that “Patients fear that DNR status means ‘you’re giving up on me.’” One nurse agreed that this concern was also shared by families who “do not understand that DNR isn’t ‘do not treat.’” Another nurse indicated that “family doesn’t fully understand and/or change their mind once faced with the reality of the situation.” Another nurse shared her concern that “They are not explained fully.” These shortcomings in the quality of code status discussions may reflect a “reluctance of medical providers to discuss DNR/DNI with patients” (social worker).

One nurse shared a story that she believed reflected a lack of thorough understanding about the measures taken with cardiopulmonary resuscitation:

Do families understand if patients remain a full code the extensive measures that will be taken? We had an elderly patient code three times before family reversed code status. Three sets of numerous compressions, lines, intubation and NG tube placement only to withdraw care. The patient died after the third code. I can’t imagine the suffering he endured.

Respondents also voiced a concern that patient preferences were not always followed. One nurse suggested that “discrepancies in understanding of DNR between families, patients, and doctors” may explain why “physicians and families are not [always] honoring a patient’s last wishes to be DNRs.”

Difficulty Locating and Discerning Previously Expressed Preferences in Medical Records

Respondents identified concerns that code status discussions were often poorly documented and that advance directives were difficult to find, impacting their utility for guiding medical care. At the time of this project, goals of care discussions were seldom documented in the medical record, even for very sick intensive care patients.

Code status would often be ordered, but there was seldom evidence of a goals-of-care discussion in the medical record. We also learned about multiple occurrences when an ICU nurse would ask why a patient was receiving critical care when that patient had a DNR order, thus conflating code status order with goals of care. There were also instances where a physician note would indicate the patient wanted to be DNR, but no corresponding order had been written. Furthermore, at the time of this study, the medical record had a consistent location identifying the existence of an advanced directive, but this notification did not direct clinicians to any supporting documentation, for example, the directive itself or a note about the discussion supporting its creation. When the advanced directive was in the chart, it was located in a separate imaging section where a manual scan was required to find it; if the directive was created outside of the facility, it had to be scanned in before it could be searched for in this manner, creating additional timeliness concerns.

Clinicians expressed a number of concerns regarding code status preferences within the medical record. One physician explained that code status documentation is “usually not with an appropriate amount of detail” and that documentation in different locations “does not match the actual order in CPRS [the medical record].” Many respondents cited how documentation inconsistencies and lapses in information pertaining to discussions with patients regarding goals of care for a hospitalization could interfere with patients receiving the care they desire. One nurse highlighted the inconsistency in documentation, “Only eight out of ten times the doctor puts code status in the admit order.” A physician shared a similar concern, “It is often unclear whether the discussion of code status has occurred, if at all.” Others indicated some staff may not know where to locate and verify DNR orders. One nurse shared her concern that inadequate documentation could mean “patients are getting things done to them because of others not knowing their status.” Another nurse explained that if patients do not have a code status order they are “assumed to be full code.” Even when code status preferences were documented, respondents shared concern about inadequate information in the medical record regarding a patient’s wishes and preferences for resuscitation. One respondent indicated, “The current order says DNR or full code. There is no means to identify specific wishes.” A physician shared the belief that goals of care discussions, including code status preferences, must be clearly specified, and that, “we have a long way to go.”

Similar concerns existed with the advance directive, although challenges with the advance directive focused on the lack of a clear, consistent method for locating the document.

Respondents acknowledged difficulties in locating the advance directive, uncertainty with their ability to find the directive, and reliance on a clerk to obtain the directive. One physician voiced frustration that although he could find evidence of an advance directive, he often could not obtain the document itself: “This is frustrating because we really need the document quickly in many situations.” The advance directive is in a “way not very visible place. It may not be in the medical record . . . We often spend too much time trying to find it.” Accordingly, “usefulness is limited due to it being hard to find and read” (MD). A nurse echoed this challenge, it is “not easy to find, not easily and readily available to all care providers.”

Challenges With Expiring Orders

Respondents also voiced frustration over a current policy requiring resident physician DNR orders lacking an attending physician’s co-signature to expire after 48 hr. This automatic expiration left patients vulnerable to receiving unwanted care due to the default to full code when gaps occur between DNR orders. One nurse voiced this concern: “I think that having DNR orders that expire during an admission is an issue . . . That could leave someone without a code status.” Another nurse elaborated that she had witnessed cases where patients were resuscitated against their desires due to the expiration of existing DNR orders: “The two day order is hard to keep current. DNR status isn’t always known (or determined). I have been to code blues where the patient is DNR!” The current process created the possibility for delays: “DNR orders expire at odd times, not always able to get a MD at the time of expiration to renew.” There seemed to be a consensus that code status orders should be continued for the duration of a hospitalization, “not as a fixed time frame” (registered nurse [RN]).

Confusion Over Terminology

Many respondents indicated how other clinicians misinterpret code status terminology. A number of respondents made the point of specifically stating that DNR “does not mean do not treat” (RN), or DNR “doesn’t mean don’t treat a remediable condition like an infection, hypertension, etc.” (MD). Respondents seemed aware of potential misinterpretations and made the point that DNR still means “We do all we can to help the patient, but if the patient’s heart stops we do not try to resuscitate them” (RT) and we “do everything up to CPR/intubation” (RN). One nurse indicated, “Patents should still get the best treatment possible, or as requested, unless cardiac arrest occurs.” Unfortunately, this practice was not always witnessed. One nurse explained that confusion with terminology resulted in “various interpretations of how to respond to urgent, critical clinic issues.” Another nurse provided an example: “I called rapid [response] on a DNR patient and the Rapid Response team was more concerned about DNR status than helping the patient.”

There were a few respondents whose responses were somewhat ambiguous, possibly reflecting uncertain understanding of the terminology. For instance, one nurse defined DNR as “don’t do anything other than basic or palliative care.” Although DNR should mean regular care until clinical deterioration requires CPR to sustain life, this response may suggest the care received prior to these events may also differ. Similarly, another nurse indicated, “No aggressive measures—life support, mechanical/chemical. Provide comfort.” This respondent may have just meant in the instance of cardiac arrest, but it is also possible that she was confusing a DNR status with comfort care. Likewise, another nurse defined DNR as “do not resuscitate—terminal disease—end of life, palliative care.” Although DNR orders may often be associated with palliative care, this is not always the case. DNR is a specific medical order that may still involve treatment of medical conditions; although comfort care can be conveyed through an order, the term refers to an entire level of care focused on comfort rather than cure.

There were also a few respondents who demonstrated misunderstandings with the term “DNR.” For instance, one nurse defined DNR as “The patient is stating they do not want chest compressions in the event of a code. They still would receive all other measures of resuscitation such as intubation and medications.” A respiratory therapist indicted that DNR “could be divided if patient wishes to say chemical stimulants ok but no chest compressions or shock etc.” Although local practice had introduced the term of “DNI” into the medical lexicon, which was a type of partial DNR order, the term DNR should encompass all aspects of resuscitation.

The term DNI was recognized as problematic. One physician indicated the “DNI designation clouds the intent and creates a middle ground of uncertainty we all fear.” Respondents consistently recognized “DNI” as “do not intubate,” but there was some uncertainty as to whether DNI was simply a part of DNR where the intubation piece was spelled out, or whether a patient could actually be resuscitated under the constraints of no endotracheal intubation. The latter seemed to be the more commonly held view, but one physician stated there was “No distinction between DNI and DNR; [DNI] is part of DNR.” The definitions of DNI provided by two different nurses demonstrate this conflict and misunderstanding. One nurse said DNI means “patients should not be intubated under any circumstances! Not for treatment of illnesses.” Another nurse explained that the DNI only refers to “intubation during an emergency . . . this only applies during a medical emergency, specifically a respiratory or cardiac code.” Conflicting interpretations of the same term are problematic in the context of patient care.

Respondents expressed uncertainty about the implementation of a “DNI” order.” One nurse inquired, “When should DNI be discussed with patient/family? Who can make patient a DNI?” Another nurse stated “DNI” indicates “do not intubate,” but then questioned, “Ever? Even for procedure? Surgery?” Another nurse asked, if a patient was “DNI” and also “DNR, should we do compressions, meds, shock?”

Many respondents indicated displeasure with the use of the term “DNI” and argued that the term should be eliminated. Respondents indicated that DNR “should be all or nothing! No pick and choose” (RN). One physician responded that “DNI” was “confusing to many. I don’t like this cafeteria approach to DNR.” Another physician referred to the ambiguity in DNR interpretations as “‘The salad effect.’ i.e. people pick ala carte.” Others echoed the term DNI should not exist: “Patients should be given options for full code or no code (DNR) and not given the option for DNI. It’s pointless and only creates problems.” As this quote conveys, in addition to the confusion associated with the use of the term “DNI,” respondents also acknowledged the idea “does not make sense from a medical standpoint” (MD). One nurse explained, “DNI should not be an order, you can’t effectively code someone without an airway.” Another nurse asked, “Was the patient/family educated that all [components of resuscitation] are necessary to revive a patient?” Another nurse elaborated, “I don’t like it when they are DNRs but have stipulations like sometimes it will say ‘can push drugs but no compressions’ when obviously if their heart is not pumping, the drugs will not circulate to be effective.”

The Introduction of New Terminology for Code Status Preferences

Because many respondents decried current code status terminology as confusing and often misunderstood, the preventive ethics team introduced a new, clearly delineated, three-tiered model for levels of patient care: (a) full support/curative care (full code), (b) intermediate support (curative care + allow natural death [AND]/DNR), and (c) comfort support (AND/DNR; see Figure 1). The order itself specifies that intermediate support does not limit treatment except in the instance of cardiopulmonary arrest. The clear delineation and definitions should reduce the confusion that “do not resuscitate” means “do not treat.” The use of the word “support” in each level of care was intended to convey that regardless of a patient’s choice, the medical team would still be supporting and caring for the patient. Respondents’ perception that this status gets misapplied to medical care is corroborated by existing research that suggests that a “DNR” status may influence the receipt of treatments other than cardiopulmonary resuscitation (Beach & Morrison, 2002). Furthermore, the new terminology eliminates the use of “DNI,” thereby removing that potential source of confusion (Sanders et al., 2011).

OPEN IN VIEWER

Figure 1.

Three-tiered code status terminology.

The hope is that this new clearer, more user-friendly terminology will also help to promote more timely and high quality goals-of-care discussions, encompassing code status, with patients and families. The concept of “Allow Natural Death” is considered a more therapeutic term that acknowledges death, does not imply the ability to resuscitate, and does not imply that not attempting to resuscitate is a failure to provide appropriate care (as suggested by the use of “DO NOT”; Schlairet & Cohen, 2013). Previous research suggests that using the term “Allow Natural Death” increases willingness to accept this status and increases family members’ comfort making end-of-life care decisions (Knox & Vereb, 2005; Venneman, Narnor-Harris, Perish, & Hamilton, 2008).

We felt the multitude of issues with the existing terminology suggested the need for a shift to the new terminology, rather than a Band-Aid approach to work with existing language that personal experience and prior research highlighted as problematic. Furthermore, the neighboring academic medical center had recently made a similar shift in their code status terminology; the changes we implemented helped to better align the two institutions and thereby reduce medical residents’ confusion. In addition, although the preventive ethics team felt that eventually we would like to eliminate the term DNR, at present we used an additive approach, changing the language from DNR to AND/DNR to reduce confusion. As Sokol (2009) indicated,

If a change of terminology can improve end of life care by reducing anxiety and costs, then surely such change is morally desirable, if not perhaps morally obligatory . . . While changing the language alone will not overcome all the problems with resuscitation decisions, it is a step in the right direction, towards a healthier relationship between patients, relatives, and clinicians and a more peaceful end for many.(p. b1723)

Developed Better Systems for Entering, Storing, and Retrieving Patients’ End-of-Life Preferences

The better systems for entering, storing, and retrieving patients’ end-of-life preferences include code status preferences and advance directives. The new proposed method for designating code status orders links this status to a goals-of-care note. One study of veterans with advanced cancer diagnoses found that only 64% of patients had timely goals of care discussions following ICU admissions (Walling et al., 2013). The new method of linking code status preferences to goals-of-care notes should increase the timeliness of these discussions, as well as improve the focus on patient values, and improve the transparency for other clinicians to understand the level of care selected by the patient. The goals of care note is now also stored in a consistent place within the medical record, improving the ability to find these documents and identify patient code status quickly.

The preventive ethics team has also suggested that new advance directives be completed in a system that allows for the document to be stored in a consistent easily accessible location within the medical record. In this way, clinicians can quickly determine whether a patient has completed an advance directive, and should be able to view the advance directive itself. This will better ensure that preferences the patient has previously expressed are accessible to the medical team.

Limitations and Future Directions

This study was conducted at a single VAMC and therefore generalizability to other hospitals is uncertain. We suspect that although policies and procedures differ between health care facilities, many of the same challenges exist and can similarly be tackled with systems-level changes. The present study is limited by the focus on clinicians’ understandings and perspectives on code status discussions. We believe that patient and family understanding is equally important; however, we focused on clinician perspectives with the belief that clear clinician understanding and supportive documentation systems are essential pre-requisites for patient/family comprehension and receipt of desired care.

Educational efforts are currently underway to facilitate implementation of the proposed changes. Future research should evaluate the impact of these changes to verify whether the anticipated benefits are realized. For instance, follow-up interviews or surveys could explore whether the new terminology is consistently and clearly understood by clinicians, and whether patients and family members feel well informed regarding code status decisions. A random review of hospital patient records could support the evaluation of clinician speed identifying patient preferences and whether code status discussions are occurring in a timelier manner than before the changes took effect. Future efforts should also focus on improving clinician’s training to strengthen the quality of goals-of-care discussions (Weiner & Roth, 2006). Finally, although the team believes that the term “Allow Natural Death” is preferable to “Do Not Resuscitate,” DNR is presently still indicated to assist clinicians in their transition to this new terminology.

We all hope that at the end of our own lives, we will have the opportunity to express our wishes and have those wishes followed. As Mario Stinger said in Destined for Oblivion: As Nature Intended, “Dying on your own terms, this is the greatest gift anyone can bestow upon a mortal man.” We hope that this research and the proposed practice changes help support a health care system that enables the delivery of the gift of patient-centered care regarding end-of-life wishes.