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 Table of Contents  
ORIGINAL ARTICLE
Year : 2019  |  Volume : 5  |  Issue : 2  |  Page : 110-117

Assessing knowledge gaps regarding end-of-life issues in patients admitted to the hospital through the emergency department


Department of Emergency Medicine, St. Luke's University Health Network, Bethlehem, PA, USA

Date of Submission06-Nov-2018
Date of Decision03-Jan-2019
Date of Acceptance15-Feb-2019
Date of Web Publication29-Aug-2019

Correspondence Address:
Dr. Rebecca Jeanmonod
801 Ostrum Street, Bethlehem, PA 18015
USA
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/IJAM.IJAM_53_18

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  Abstract 


Introduction: United States law requires hospitals to document advanced directives for patients on admission with no provision for assessment of their understanding.
Aim: We sought to assess patients' knowledge gaps regarding end-of-life care, including do-not-resuscitate and do-not-intubate orders, physician orders for life-sustaining treatment, outcomes after cardiopulmonary resuscitation, and preferences regarding end-of-life care
Methods: This is a cross-sectional survey-based study of adult patients aged 55 and older who were being admitted to a large community hospital from the emergency department (ED). Patients were not excluded based on acuity or reason for admission. The survey questioned patients regarding age, primary care provider status, ED visits and hospitalization within the prior year, prior discussions with family, primary care, or inpatient care physicians regarding advanced medical directives, prior completion of advanced medical directives paperwork, knowledge of outcomes after cardiac arrest, and general attitudes regarding priorities related to a “good death”.
Results: Although 98% of patients had primary care physicians, only one-fourth recalled discussing advanced directives with their doctors. About half of patients had discussed their wishes with their families, and 52% had signed advanced directive paperwork. Patients overestimated survival after cardiac arrest. The most common elements reported by patients as being important to a “good death” were the absence of pain (26%), the presence of family (24%), and death at home (16%).
Conclusion: Patients have clear ideas for what makes a good death but have inadequate knowledge regarding resuscitative outcomes and do not make use of advanced directives. Physicians miss opportunities to educate patients and assist with these difficult decisions. Closing the gap between providers' understanding of patients' desires, and patients' understanding of end-of-life care is an opportunity for improvement.
The following core competencies are addressed in this article: Patient care and procedural skills and Systems-based practice.

Keywords: Advanced directives, do-not-resuscitate, end-of-life care, physician orders for life-sustaining treatment


How to cite this article:
Balakrishnan V, Mehrotra M, Zwiebel M, Brandon N, Vera L, Jeanmonod R. Assessing knowledge gaps regarding end-of-life issues in patients admitted to the hospital through the emergency department. Int J Acad Med 2019;5:110-7

How to cite this URL:
Balakrishnan V, Mehrotra M, Zwiebel M, Brandon N, Vera L, Jeanmonod R. Assessing knowledge gaps regarding end-of-life issues in patients admitted to the hospital through the emergency department. Int J Acad Med [serial online] 2019 [cited 2019 Sep 23];5:110-7. Available from: http://www.ijam-web.org/text.asp?2019/5/2/110/265682




  Introduction Top


In 1990, the United States Congress passed the Patient Self-Determination Act, which required hospitals to elicit patient wishes regarding medical advanced directives upon admission to the facility, provide information regarding advanced health-care directives, and document this information into the patients' medical records.[1] This law does not apply to individual physicians (e.g., the emergency physician, the admitting physician, the patient's primary care doctor, etc.) and does not require a facility to offer an opportunity for patients to complete an advanced medical directive.[1] Despite the implementation of this law in 1991, most adult Americans do not have a completed living will or a health-care power of attorney. A systematic review performed in 2016 including 795,909 patients across 150 studies found that only 36.7% of patients had completed advanced directives; further, only 46% of patients over the age of 65 had done so.[2]

Other studies have demonstrated that, despite legislation regarding provision of information regarding end-of-life care, patients do not have a good understanding of medical interventions or even terminology used when referring to advanced medical directives.[3],[4],[5] Many patients cannot adequately describe the steps involved in cardiopulmonary resuscitation (CPR) and overestimate the likelihood of survival after cardiac arrest.[5],[6],[7] This lack of knowledge may be translated to unclear decision-making and result in unwanted treatments for patients near the end of life.[5],[6],[8] Conversely, adequate knowledge of opportunities and possible interventions at the end of life may alter patients' preferences for care.[5],[6],[9],[10] Where should this information come?

In terms of communication regarding advanced medical directives, patients feel it is important for these discussions to occur with a health-care provider, preferably a primary care provider; however, only a minority of studied patients report having had impactful discussions regarding advanced medical directives with their own doctors.[4],[11],[12] Patients generally feel that these discussions should take place when they are healthy; in actuality though, studies demonstrate that most of these end-of-life discussions do not take place until the patient is seriously ill.[13],[14] In 2016, to encourage individual physicians to counsel patients regarding end of life care and decisions, Medicare began to reimburse for this counseling. It is unclear whether this has had an impact on patients, if it has increased the proportion of patients who have undergone counseling regarding end-of-life care, or if it has increased patients' knowledge of advanced medical directives.

Objectives

We sought to assess patients' knowledge gaps regarding end-of-life issues, including do-not-resuscitate and do-not-intubate orders, physician orders for life-sustaining treatment, knowledge of outcomes after CPR, and preferences regarding end-of-life care. In addition, we surveyed patients regarding prior hospitalizations and discussions with health-care providers on end-of-life care both in the primary care setting and upon hospitalization.


  Materials and Methods Top


Study design

This is a cross-sectional survey-based study of adult patients aged 55 and older who were being admitted to the hospital from the emergency department (ED). A convenience sample of eligible patients was identified and enrolled by research associates or medical providers. Patients were enrolled and surveyed after all ED management and disposition was completed, and enrollment in the study did not alter patient management or ED length of stay. All providers involved in the study completed mandatory research training and certification, and the study protocol was reviewed by the institutional review board and found to be exempt.

Study setting and population

The study was performed at a community Level 1 trauma center that has an annual ED census of 55,000. The study facility is in the third largest metropolitan area in Pennsylvania and hosts an emergency medicine residency.

Research associates were limited to three emergency medicine interested medical students and two emergency medicine residents who completed research training and underwent training in survey completion and administration by the principal investigator. Patients were eligible for the study if they were aged 55 years or older, were being admitted to the hospital after evaluation in the ED (i.e., were not “direct admits” or “trauma alerts”), and were able to read and speak English. Patients were permitted to have assistance with the survey from family; therefore, patients with visual impairment were not excluded. Patients were not excluded based on acuity of complaint, disposition location (for example, going to the intensive care unit versus operating room versus medical floor), nor reason for admission. Patients were also not excluded based on dementia if they met all other criteria. Patients were given informational material regarding the purpose of the study. Informed consent was waived as the survey was entirely anonymous.

Study protocol and measurements

Patients were enrolled as a convenience sample during times when study investigators were available. The study investigators would identify patients who had been admitted to the hospital but were still present in the ED awaiting transfer to their rooms. Patients were approached with standardized language regarding their willingness to participate in a survey regarding their knowledge and preferences regarding end-of-life medical care. Patients were provided with the survey, a clipboard, and a pen. The survey questioned the patients regarding age, presence of an established primary care provider, ED visits and hospitalization within the prior year, prior discussions with family, primary care, or inpatient care physicians regarding advanced medical directives, prior completion of advanced medical directives paperwork, knowledge of outcomes after cardiac arrest, and general attitudes regarding priorities related to a “good death.” Patients were asked to rank, in order of importance, the following items in regards to their contribution to a good death: death at home, absence of nausea, medical personnel presence, family presence, absence of dyspnea, absence of pain, death in a hospital, living as long as possible, and presence of religious leaders. Patients were instructed to return the survey to the ED nurse or to leave the survey in their rooms when they were moved to the inpatient floors. Surveys were collected and all data were entered into a standardized Microsoft Excel 2007 spreadsheet (Microsoft Corporation, Redmond, WA) by a single-trained nonphysician student associate who was not involved in patient enrollment.[Additional file 1]

Data analysis

Data were analyzed by descriptive statistics. Answers that were not drawn from a closed list of possibilities were explored using grounded theory. All data were analyzed using MedCalc (© 1993-2013, Ostend, Belgium) and VassarStats.net (© Richard Lowry 1998–2018).


  Results Top


Patient demographics

One hundred and five patients were enrolled, with 41% male. More than half of the patients were over the age of 70, with >25% older than 80 [Table 1]. Eighty-seven percent of patients identified themselves as Caucasian. 77% of patients reported having an income <$50,000 annually and 54% reported high school as the highest level of education completed.
Table 1: Baseline characteristics

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Healthcare access and utilization

Most patients (66%) reported having public health insurance, with 29% having private insurance and 3% reporting that they paid out of pocket. 3% of patients did not respond to this question. 98% reported that they had a primary care doctor that they saw at least once per year. Most patients reported both ED visits and hospitalization in the prior year [Table 2].
Table 2: Annual health-care utilization

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Advanced directives

Fifty-two percent of patients stated that they had signed paperwork regarding advanced medical directives, 36% stated they had not, and 12% of patients stated that they were not sure if they had ever signed any documents regarding end-of-life care. Only 52% of patients stated that they had discussed their desires for CPR or mechanical ventilation with their families (44% stated they had not, with the remaining declining to answer). 41% of patients recalled having a physician discuss advanced medical directives with them when they were hospitalized, but only 26% of patients recalled their primary care doctor ever discussing advanced directives during office visits. 10% of patients were unsure if their physician had ever mentioned CPR, mechanical ventilation, and advanced directives to them [Table 3].
Table 3: Patients' discussions regarding cardiopulmonary resuscitation and ventilation

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Knowledge regarding resuscitative outcomes

Patients generally overestimated the likelihood of survival with resuscitative measures [Figure 1]. While the actual survival from out of hospital cardiac arrest for all comers is close to 5%, the majority (75%) thought that survival after CPR was much higher. Patients did correctly assume that in-hospital cardiac arrest has a higher chance of survival compared to out-of-hospital arrests. Finally, patients tended to believe that 47% of the time, defibrillation is 26%–100% successful, grossly overestimating the likelihood of success of defibrillation. Even selecting for a group for which defibrillation is likely to be successful, that is, found by emergency medical services (EMS) with an initial shockable rhythm, the chance of survival is only 28%.[15] Interestingly, patients had a lower response rate for all questions regarding outcomes of CPR, with 19%–24% declining to respond.
Figure 1: Patients' responses regarding the likelihood of survival after in-hospital cardiac arrest, prehospital cardiac arrest, and recovery after defibrillation attempt

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Preferences regarding end of life

The most common elements reported by patients as being important to a “good death” were the absence of pain (26%), the presence of family (24%), and death at home (16%). Only 2% thought it was most important to have medical personnel present and only 4% wished to die in a hospital [Figure 2]. 75% of patients listed having family present at the end of life as one of the top three most important components of a good death, and 70% listed absence of pain as one of the top three most important components. Although only 40% of patients reported dying at home as one of the top three most important parts of a good death, a mere 8% listed death in the hospital as an important element. Thirty-two percent of patients listed that living as long as possible was one of the top three most important components of a good death, and 31% considered having religious leaders present as being necessary. Other than pain, controlling symptoms of nausea and dyspnea were rated as less critical for a good death, with 20% and 27% of patients, respectively, listing it as one of the top three most important elements. In the area for patients to write their thoughts, common themes included a wish for rapid death, death in sleep, and death surrounded by family, friends, and pets. Three patients expressed a desire to die in hospice care.
Figure 2: Patient listed most important component to a good death

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  Discussion Top


The majority of patients stated having family members present, feeling comfortable, and being at home at the end of life as the top three most important components of a “good death.” Advanced medical directives are an important tool for patients to express this to physicians, specifically to reflect what is important in the care that they should be provided at the end of their lives. As emergency physicians, we recognize that some of the most important care that we provide for our patients is at the end of their lives, yet our survey demonstrates that our patients have different desires for their goals of care during their last days as compared to the care that is actually provided.

Despite the existence of advanced medical directives, providing an opportunity for patients to explicitly express what is important to them, only the minority of patients utilize them. Ninety-eight percent of our patients had seen their primary doctors in the year before completing this survey, but despite having the opportunity to discuss end-of-life care with their own family doctor, only a minority actually did so (26%). Only about half of patients had discussed end-of-life care with their family members, in spite of the fact that those family members would likely be the next to make a goals-of-care decision should the patient be unable to do so. This is unfortunately similar to findings in the previous studies.[2] This lack of communication between patients, families, and health-care professionals about goals of care before the need for that knowledge is an important gap in care that we should not only recognize but also rectify to be able to provide better care for our patients. Although it is not ideal for this to be done in the ED when a patient is ill compared to in a family doctor's office when the patient is healthy, our survey reflects that this gap in care exists and that providers in the ED are in a circumstance to make a difference. Documentation of “code status” on admission to the hospital, which is routine in many institutions, is not adequate and does not address the knowledge gap of the actual decision makers: patients and families.

In addition to providing our patients with explicit opportunity to complete advanced directives, we need to educate our patients about what occurs during resuscitative events such as CPR, defibrillation, and intubation. The fact that about a fifth of respondents did not answer questions related to outcomes of interventions and that the ones who did respond overestimated positive outcomes is congruent to previous studies and demonstrates that patients have inadequate knowledge regarding resuscitative outcomes.[5],[6],[7]

Limitations

Our study is limited by its small sample size, although its conclusions and trends reflect those of the literature on the whole. It is also limited by being representative of a single institution. That institution, or rather the patient population represented in the study, was overwhelmingly Caucasian and specifically a more poor (as the annual income of 77% were < 50K), uneducated (with 54% with a high school education or less). The population that responded to this survey was a fairly homogenous population and so unlikely to represent other cultures and how those other cultures potentially would respond to the same situation and hence the study may not be generalizable to other patients and settings.


  Conclusions Top


Patients have clear ideas for what makes a good death but have inadequate knowledge regarding resuscitative outcomes and do not make use of advanced directives. Physicians miss opportunities to educate patients and assist with these difficult decisions. Closing the gap between providers' understanding of patients' desires and patients' understanding of end-of-life care is a great opportunity for improvement.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.

Ethical conduct of research

This study was reviewed by the Institutional Review Board and found to be exempt. It was performed with adherence to national and international standards of medical ethics, as outlined by the EQUATOR Network (http://www.equator-network.org/).

 
  References Top

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Koch KA. Patient self-determination act. J Fla Med Assoc 1992;79:240-3.  Back to cited text no. 1
    
2.
Yadav KN, Gabler NB, Cooney E, Kent S, Kim J, Herbst N, et al. Approximately one in three US adults completes any type of advance directive for end-of-life care. Health Aff (Millwood) 2017;36:1244-51.  Back to cited text no. 2
    
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Heyland DK, Frank C, Groll D, Pichora D, Dodek P, Rocker G, et al. Understanding cardiopulmonary resuscitation decision making: Perspectives of seriously ill hospitalized patients and family members. Chest 2006;130:419-28.  Back to cited text no. 3
    
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Downar J, Luk T, Sibbald RW, Santini T, Mikhael J, Berman H, et al. Why do patients agree to a “Do not resuscitate” or “Full code” order? Perspectives of medical inpatients. J Gen Intern Med 2011;26:582-7.  Back to cited text no. 4
    
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Kaldjian LC, Erekson ZD, Haberle TH, Curtis AE, Shinkunas LA, Cannon KT, et al. Code status discussions and goals of care among hospitalised adults. J Med Ethics 2009;35:338-42.  Back to cited text no. 5
    
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Kerridge IH, Pearson SA, Rolfe IE, Lowe M, McPhee JR. Impact of written information on knowledge and preferences for cardiopulmonary resuscitation. Med J Aust 1999;171:239-42.  Back to cited text no. 7
    
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Adams DH, Snedden DP. How misconceptions among elderly patients regarding survival outcomes of inpatient cardiopulmonary resuscitation affect do-not-resuscitate orders. J Am Osteopath Assoc 2006;106:402-4.  Back to cited text no. 8
    
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Nicolasora N, Pannala R, Mountantonakis S, Shanmugam B, DeGirolamo A, Amoateng-Adjepong Y, et al. If asked, hospitalized patients will choose whether to receive life-sustaining therapies. J Hosp Med 2006;1:161-7.  Back to cited text no. 9
    
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Hoerger M, Perry LM, Gramling R, Epstein RM, Duberstein PR. Does educating patients about the early palliative care study increase preferences for outpatient palliative cancer care? Findings from project EMPOWER. Health Psychol 2017;36:538-48.  Back to cited text no. 10
    
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Robinson C, Kolesar S, Boyko M, Berkowitz J, Calam B, Collins M, et al. Awareness of do-not-resuscitate orders: What do patients know and want? Can Fam Physician 2012;58:e229-33.  Back to cited text no. 12
    
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Curtis JR, Patrick DL. Barriers to communication about end-of-life care in AIDS patients. J Gen Intern Med 1997;12:736-41.  Back to cited text no. 13
    
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Eliasson AH, Parker JM, Shorr AF, Babb KA, Harris R, Aaronson BA, et al. Impediments to writing do-not-resuscitate orders. Arch Intern Med 1999;159:2213-8.  Back to cited text no. 14
    
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Go AS, Mozaffarian D, Roger VL, Benjamin EJ, Berry JD, Borden WB, et al. Heart disease and stroke statistics-2013 update: A report from the American Heart Association. Circulation 2013;127:e6-245.  Back to cited text no. 15
    


    Figures

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    Tables

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