The Experience of Hospital Death: Assessing the Quality of Care at an Academic Medical Center.

BACKGROUND: The quality of perimortem care received by patients who died at our hospitals was unknown. OBJECTIVE: To describe the quality of hospital care experienced in the last week of life, as perceived by decedents' families. DESIGN: Telephone survey that included established measures and investigator-developed content. SETTING: Large, tertiary care center known for high-quality, cost-effective care. PARTICIPANTS: Family members of 104 patients who died in-hospital (10% of annual deaths) over the course of 1 year. INTERVENTION: None. MEASUREMENTS: Participant perceptions of the decedent's care, including symptom management, personal care, communication, and care coordination. RESULTS: Decedents were mostly male (64%), white (96%), married (73%), and Christian (91%). Most survey participants were spouses of the decedent (68%); they were predominately white (98%), female (70%), and Christian (90%) and had a median age of 70 years (range, 35-91 years). Overall satisfaction was high. Pain, dyspnea, and anxiety or sadness were highly prevalent among decedents (73%, 73%, and 55%, respectively) but largely well managed. Most participants believed that decedents were treated respectfully and kindly by staff (87%) and that sufficient help was available to assist with medications and dressing changes (97%). Opportunities for improvement included management of decedents' anxiety or sadness (29%) and personal care (25%), emotional support of the family (57%), communication regarding decedents' illness (29%), and receiving contradictory or confusing information (33%). CONCLUSION: Despite high satisfaction with care overall, we identified important unmet needs. Addressing these gaps will improve the care of dying patients.

An analysis of reflective writing early in the medical curriculum: The relationship between reflective capacity and academic achievement.

OBJECTIVE: To examine the relationship between reflection, gender, residency choice, word count, and academic achievement among medical students. METHODS: A modified version of the Reflection Evaluation for Learners' Enhanced Competencies Tool (REFLECT) was developed and used for this study (Cronbach's alpha of 0.86 with an intraclass correlation coefficient [ICC] of 0.68). This was applied to writing samples about professionalism in gross anatomy from first-year medical students between 2005 and 2011. Four analysts reviewed and scored written reflections independently. Composite reflection scores were compared with gender, residency choice, length of written reflection, NBME® Gross Anatomy and Embryology Subject Examination scores, and final gross anatomy course. RESULTS: Total of 319 written reflections were evaluated. Female students who pursued medicine specialties had the highest composite reflection scores (87 [27.2%]). Word count frequently correlated with reflection score (p < 0.0001). Students who performed well on the NBME® Gross Anatomy and Embryology Subject Examination tended to achieve high anatomy course grades (p < 0.0001). There was no statistically significant relationship between composite reflection scores and NBME® Gross Anatomy and Embryology Subject Examination scores (p = 0.16) or anatomy course grades (p = 0.90). CONCLUSIONS: This study suggests there are likely no correlations between reflective capacity and academic performance on tests of medical knowledge administered early in the medical curriculum.

Palliative Care Consultation and Associated End-of-Life Care After Pacemaker or Implantable Cardioverter-Defibrillator Deactivation.

The presence of cardiac pacemakers and defibrillators complicates making end-of-life (EOL) medical decisions. Palliative care/medicine consultation (PCMC) may benefit patients and primary providers, but data are lacking. We retrospectively reviewed 150 charts of patients who underwent device deactivation at our tertiary care center (between November 1, 2008, and September 1, 2012), assessing for PCMC and outcomes. Overall, 42% of patients received a PCMC, and 68% of those PCMCs specifically addressed device deactivation. Median survival following deactivation was 2 days, with 42% of deaths occurring within 1 day of deactivation. There was no difference in survival between the groups. The EOL care for patients with implanted cardiac devices is complex, but PCMC may assist with symptom management and clarification of goals of care for such patients.

Dying in the Hospital: Perspectives of family members.

BACKGROUND: Although most patients express a preference to die at home, many (over 30 percent) still die in hospital. This study's purpose was to explore the experience of hospital death from the perspective of patients' family members. METHODS: interviews were conducted with family members of patients who had died at hospitals affiliated with a large tertiary referral centre in the United States. Content analysis was used to analyze findings. FINDINGS: We interviewed 30 family members by phone. Themes were arranged by time frame: before death, time of death, and after death. CONCLUSION: Families do not interpret clinical cues leading up to death in the same way healthcare providers do; families need clear and direct explanations from providers. Clinicians should assess patient and family understandings of prognosis and communicate clearly and directly. Family members value being with their loved one at the time of death, and they value spending time with the body after death; this should be facilitated in clinical practice.

"It's not broke, so let's not try to fix it": why patients decline a cardiovascular implantable electronic device.

BACKGROUND: Few patients decline therapy of a cardiovascular implantable electronic device (CIED), and little is known about the characteristics or reasoning of those who do. Our objective was to describe the reasons why patients decline CIED implantation using qualitative methods. METHODS: Qualitative, engaging thematic analysis. Three patient focus groups led by two trained facilitators and one semi-structured interview guide. RESULTS: Of the 13 patients, two were women and all were white (median age [range], 65 [44-88] years). Five themes emerged: (1) don't mess with a good thing; (2) my health is good enough; (3) independent decision making; (4) it's your job, but it's my choice; and (5) gaps in learning. Most patients who decline CIEDs are asymptomatic. Other reasons to decline included feeling well, enjoying life, acceptance of the future, desire to try to improve health through diet and exercise, hearing of negative CIED experiences, and unwillingness to take on associated risks of CIED implantation. A medical record review showed that clinicians understand patients' reasons for declining CIED treatment. However, focus group data suggest that gaps in patients' knowledge around the purpose and function of CIEDs exist and patients may benefit from targeted education. CONCLUSIONS: Patients decline implantation of CIEDs for various reasons. Most patients who decline therapy are asymptomatic at the time of their device consult. Focus group information show data suggestive that device consultations should be enhanced to address gaps in patient learning and confirm knowledge transfer. Clinicians should revisit treatment options iteratively.

Choices for patients "without a choice": Interviews with patients who received a left ventricular assist device as destination therapy.

BACKGROUND: Patients undergo major physical and psychological changes after implantation of a left ventricular assist device as destination therapy (DT). We sought to qualitatively study outcomes and attitudes of patients after DT. METHODS AND RESULTS: Ambulatory outpatients with DT at our institution were invited to be interviewed between June and August 2011. In-person interviews were audio-recorded, transcribed, and analyzed qualitatively using thematic analysis. The study included 12 patients (11 men) from the Midwestern United States with a median age of 71.5 years (range, 33-78 years). Interviews were conducted at a median (range) time of 1.37 (0.43-5.04) years after DT implantation. Most patients were white (n=11), married (n=10), and Christian (n=10). We identified 6 themes commonly discussed by the interviewees: preparedness planning, new lease on life, optimizing support networks, systemic limitations, reflections on time, and communication matters. Analysis revealed that most patients saw DT as their only choice, despite other alternatives. CONCLUSIONS: Ambulatory patients reported varied experiences after DT but commonly reported gratitude for improved functional status and a perception of improved symptom burden. Recommendations for improving post-DT care include developing patient support systems, systematizing education for community providers, and expanding respite services.

Features and outcomes of patients who underwent cardiac device deactivation.

IMPORTANCE: Little is known about patients who undergo cardiovascular implantable electronic device deactivation. OBJECTIVE: To describe features and outcomes of patients who underwent cardiovascular implantable electronic device deactivation. DESIGN, SETTING, AND PARTICIPANTS: Retrospective review of medical records of 150 patients at a tertiary academic medical center (Mayo Clinic, Rochester, Minnesota). EXPOSURE Cardiovascular implantable electronic device deactivation. MAIN OUTCOMES AND MEASURES: Demographic and clinical data and information regarding advance directives, ethics consultations, palliative medicine consultations, and cardiovascular implantable electronic device deactivations. RESULTS: Of the 150 patients (median age, 79 years; 67% were male), 149 (99%) had poor or terminal prognoses. Overall, 118 patients (79%) underwent deactivation of tachycardia therapies only, and 32 (21%) underwent deactivation of bradycardia therapies with or without tachycardia therapies (6 patients [4%] were pacemaker-dependent). Half of the deactivation requests (51%) were made by surrogates. A majority of deactivations (55%) were carried out by nurses. Although 85 patients (57%) had advance directives, only 1 mentioned the device in the directive. Ethics consultations occurred in 3 patients (2%) and palliative medicine consultations in 64 (43%). The proportions of patients who died within 1 month of device deactivation were similar for those who underwent deactivation of tachycardia therapies only and those who underwent deactivation of bradycardia therapies with or without tachycardia therapies (85% vs 94%; P = .37). CONCLUSIONS AND RELEVANCE: Most requests for cardiovascular implantable electronic device deactivation were for implantable cardioverter-defibrillator-delivered tachycardia therapies only. Many of these requests were made by surrogates. Advance directives executed by patients with these devices rarely addressed device management. Regardless of device therapy, most patients died shortly after device deactivation. Hence, a device deactivation decision may reflect the seriousness of a given patient's underlying illness. Patients with devices should engage in advance care planning to ensure that future care is consistent with their preferences.

The prevalence and contents of advance directives in patients with pacemakers.

BACKGROUND: Little is known about the use of advance directives (ADs) in patients who have implantable cardiac pacemakers (PMs). METHODS: We conducted a retrospective review of the medical records of residents of Olmsted County, Minnesota, who underwent implantation of a cardiac PM at Mayo Clinic (Rochester, Minnesota) during 2006 and 2007, and determined the prevalence and contents of ADs in these patients. RESULTS: During the study period, 205 residents of Olmsted County (men, 53%) underwent PM implantation (mean age [standard deviation] at implantation, 77 [15] years). Overall, 120 patients (59%) had ADs. Of these, 63 ADs (53%) were executed more than 12 months before and 33 (28%) were executed after PM implantation. Many patients specifically mentioned life-prolonging treatments in their ADs: cardiopulmonary resuscitation, 76 (63%); mechanical ventilation, 56 (47%); and hemodialysis, 31 (26%). Pain control was mentioned in 79 ADs (66%) and comfort measures were mentioned in 42 ADs (35%). Furthermore, the AD of many patients contained a general statement about end-of-life care (e.g., no "heroic measures"). However, only one AD (1%) specifically addressed the end-of-life management of the PM. CONCLUSIONS: More than half of the patients with PMs in our study had executed an AD, but only one patient specifically mentioned her PM in her AD. These results suggest that patients with PMs should be encouraged to execute ADs and specifically address end-of-life device management in their ADs. Doing so may prevent end-of-life ethical dilemmas related to PM management.

Clinicians' attitudes regarding withdrawal of left ventricular assist devices in patients approaching the end of life.

AIMS: Left ventricular assist devices (LVADs) are implanted to support the circulation of patients with advanced heart failure. Patients approaching death, or their surrogates, may request withdrawal of LVAD support. We sought to study the attitudes and practices of heart failure clinicians regarding withdrawal of LVAD support in patients approaching death. METHODS AND RESULTS: Using internet-based and secure methods, we surveyed members of the European Society of Cardiology-Heart Failure Association (ESC-HFA), the International Society for Heart and Lung Transplantation (ISHLT), and the Heart Failure Society of America (HFSA) to assess their attitudes and practices regarding LVAD withdrawal for patients approaching death. The results indicated that clinicians have varied attitudes and practices regarding withdrawing LVAD support in these patients. Furthermore, ESC-HFA clinicians (primarily European) and ISHLT and HFSA clinicians (primarily North American) differed in their attitudes and practices regarding withdrawal of LVAD support, particularly its ethical and legal permissibility. For example, more European clinicians than North American clinicians regarded withdrawing LVAD support as a form of euthanasia. CONCLUSION: Opinions and level of comfort with LVAD withdrawal vary among clinicians. Clinicians should be aware of suggested approaches or guidelines for managing requests for withdrawal of LVAD therapy.

"We as Human Beings Get Farther and Farther Apart": the experiences of patients with remote monitoring systems.

OBJECTIVE: To explore the experiences of patients living with an implantable cardioverter-defibrillator (ICD) who had received remote monitoring (RM). BACKGROUND: Anecdotal evidence suggests that not all patients with RM use the technology. METHODS: Focus groups of patients with an ICD who received an RM system. Transcripts reviewed using thematic analysis. RESULTS: Nine patients (3 women and 6 men; median [range] age, 73 [58-91] years) received an RM system. Patients were assigned to a group in regard to RM system use (nonusers, n = 5; users, n = 4). Few nonusers recalled having prior conversations about the system. Users described it as "simple" and "easy" to use. Nonusers often were unsure whether their system was correctly transmitting information. System benefits perceived by users included convenience and security. Nonusers expressed mistrust. Recommendations included early education and help lines. CONCLUSIONS: Patient adherence to RM systems can be improved by explaining perceived benefits and addressing barriers to use.

The establishment of research ethics consultation services (RECS): an emerging research resource.

Emphasis on translational research to facilitate progression from the laboratory into the community also creates a dynamic in which ethics and social policy questions and solutions are ever pressing. In response, academic institutions are creating Research Ethics Consultation Services (RECS). All Clinical Translational Science Award institutions were surveyed in early 2010 to determine which institutions have a RECS in operation and what is their composition and function. Of the 46 institutions surveyed, 33 (70%) have a RECS. Only 15 RECS have received any consult requests in the last year. Issues that are common among these relatively nascent services include relationships with institutional oversight committees, balancing requestor concerns about confidentiality with research integrity and human subjects protection priorities, tracking consult data and outcomes, and developing systems for internal evaluation. There is variability in how these issues are approached. It will be important to be attentive to the institutional context to develop an appropriate approach. Further data about the issues raised by requestors and the recommendations provided are necessary to build a community of scholars who can navigate and resolve ethical issues encountered along the translational research pathway.

Perspectives of patients with cardiovascular implantable electronic devices who received advisory warnings.

OBJECTIVE: To learn the perspectives of patients with cardiovascular implantable electronic devices (CIEDs) who received device-related advisories. BACKGROUND: CIEDs are placed under advisory because of potential malfunctions. METHODS: Qualitative methods were used. Focus groups were conducted of 10 patients who had CIEDs under advisory. Audio recordings of the focus group discussions were transcribed and analyzed for content in accordance with qualitative analysis methods, specifically thematic analysis. RESULTS: Major themes were identified: patients' attitudes toward their devices under advisory, education about advisories, emotional responses to advisories, impact on loved ones, and what affected patients would say to the chief executive officers of CIED manufacturers. Although the patients felt "fortunate and blessed" to have their devices, they reported a range of emotional responses to the advisories (from no concern to "outrage"). Patients preferred to learn about advisories from their physicians, not from news media. Loved ones had as many, if not more, advisory-related concerns than the patients. Patients had recommendations for chief executive officers of CIED manufacturers regarding advisories, including providing timely and comprehensible information and emotional support, taking responsibility, and collaborating with health care providers. Patients wanted to know what prompted the advisory and what will be done to fix the problem. CONCLUSIONS: The experiences and perspectives of patients with CIEDs under advisory not only encompass their emotional responses to advisories, but also their views on how the advisory notification process can be improved. These findings should be informative to CIED manufacturers and clinicians.

Readability of "Dear Patient" device advisory notification letters created by a device manufacturer.

BACKGROUND: In 2006, the Heart Rhythm Society (HRS) recommended that cardiovascular implantable electronic device (CIED) manufacturers use advisory notification letters to communicate with affected patients. OBJECTIVE: To evaluate the readability of the HRS sample "patient device advisory notification" letter and those created by 1 CIED manufacturer. METHODS: The HRS sample letter and 25 Boston Scientific Corporation letters dated from 2005 through 2011 were evaluated by using 6 readability tests. RESULTS: Readability (Flesch-Kincaid score) of the HRS sample letter was grade level 12.5, and median readability of the device manufacturer letters was grade level 12.8 (range 10.8-18.9). Similar results were obtained by using other readability scales. No letters had readability scores at the National Work Group on Literacy and Health's recommended reading level-fifth grade; the letters' readability exceeded this recommended level by an average of 7.7 grades (95% confidence interval 6.9-8.5; P<.001). Likewise, no letters had readability scores at the average reading level of US adults-eighth grade; the letters' readability exceeded this level by an average of 4.7 grades (95% confidence interval 3.9-5.5; P< .001). CONCLUSIONS: The readability of the HRS sample letter and those created by a CIED manufacturer significantly exceeded the recommended and average US adults' reading skill levels. Such letters are unlikely to be informative to many patients. CIED manufacturers should ensure that advisory letters are comprehensible to most affected patients.

The use of advance directives among patients with implantable cardioverter defibrillators.

BACKGROUND: We aimed to determine the prevalence of advance directives (ADs) among patients with implantable cardioverter defibrillators (ICDs) and of ADs that addressed ICD management at the end of life. METHODS: The medical records of all patients who underwent ICD implantation during 2007 at a single institution were reviewed retrospectively to determine the number of patients with an AD and the number of ADs mentioning the ICD specifically (i.e. ICD management at end of life). RESULTS: During 2007, 420 patients (males, 71%) underwent ICD implantation at our institution (mean age [range] at implantation, 63 [1-90] years). Primary prevention was the most common indication for device therapy (254 patients [61%]). Overall, 127 patients (30%) had an AD, with 83 ADs (65%) completed more than 12 months before ICD implantation and 10 (8%) completed after it. Several life-sustaining treatments were mentioned in the ADs: tube feeding, 46 (37%); cardiopulmonary resuscitation, 25 (20%); mechanical ventilation, 22 (17%); and hemodialysis, nine (7%). Pain control was mentioned in 58 ADs (46%) and comfort measures in 38 (30%). However, only two ADs (2%) mentioned the ICD or its deactivation at end of life. CONCLUSIONS: About one-third of patients with ICDs had an AD, but only a couple ADs mentioned the ICD. These results suggest that clinicians should not only encourage patients with ICDs to complete an AD, but also encourage them to address ICD management specifically. Not addressing ICD management in an AD may result in ethical dilemmas during end-of-life care.

"I felt like the angel of death": role conflicts and moral distress among allied professionals employed by the US cardiovascular implantable electronic device industry.

PURPOSE: This study aimed to identify themes associated with role conflicts and moral distress experienced by cardiovascular implantable electronic device (CIED) industry-employed allied professionals (IEAPs) in the clinical setting. METHODS: Focus groups were used to elicit perspectives from IEAPs who had deactivated a CIED. RESULTS: Seventeen IEAPs (five women) reported increased clinical presence and work-related role conflicts and moral distress along several themes: (1) relationships with patients, (2) relationships with clinicians, (3) role ambiguity, (4) customer service to clinicians, and (5) CIED deactivation. Patients often misperceived IEAPs as physicians or nurses. Many physicians expected IEAPs to perform clinical duties. Customer service obligations exacerbated IEAP role conflicts and moral distress because of dual agency. IEAPs commonly received and carried out requests to deactivate CIEDs; doing so, however, generated considerable distress-particularly deactivations of pacemakers in pacemaker-dependent patients. Several described themselves as "angels of death." IEAPs had recommendations for mitigating role conflicts and moral distress, including improving the deactivation process. CONCLUSIONS: IEAPs experienced role conflicts and moral distress regarding their activities in the clinical setting and customer service obligations. Health care institutions should develop and enforce clear boundaries between IEAPs and clinicians in the clinical setting. Clinicians and IEAPs should adhere to these boundaries.

"Just Because We Can Doesn't Mean We Should": views of nurses on deactivation of pacemakers and implantable cardioverter-defibrillators.

PURPOSE: This study aims to identify nurses' concerns about the clinical, ethical, and legal aspects of deactivating cardiovascular implantable electronic devices (CIEDs). METHODS: We used focus groups to discuss decision making in CIED management. RESULTS: Fourteen nurses described the informed consent process as overly focused on procedures, with inadequate coverage of living with a device (e.g., infection risks and device shocks). Elderly patients were especially vulnerable to physician or family pressure about CIED implantation. Nurses believed that initial advance care planning discussions were infrequent and rarely revisited when health status changed. Many patients did not know that CIEDs could be deactivated; it was often addressed reactively (i.e., after multiple shocks) or when patients became too ill to participate in decision making. Nurses generally were supportive of CIED deactivation when it was requested by a well-informed patient. However, nurses distinguished between withholding versus withdrawing treatment (i.e., turning off CIEDs vs. declining implantation). Although most patients viewed their device as lifesaving, others perceived them as a "ticking time bomb." CONCLUSIONS: Nurses identified concerns about CIED decision making from implantation through end-of-life care and device deactivation and suggested avenues for improving patient care including early and regular advance care planning.

Palliative medicine consultation for preparedness planning in patients receiving left ventricular assist devices as destination therapy.

OBJECTIVE: To assess the benefit of proactive palliative medicine consultation for delineation of goals of care and quality-of-life preferences before implantation of left ventricular assist devices as destination therapy (DT). PATIENTS AND METHODS: We retrospectively reviewed the cases of patients who received DT between January 15, 2009, and January 1, 2010. RESULTS: Of 19 patients identified, 13 (68%) received proactive palliative medicine consultation. Median time of palliative medicine consultation was 1 day before DT implantation (range, 5 days before to 16 days after). Thirteen patients (68%) completed advance directives. The DT implantation team and families reported that preimplantation discussions and goals of care planning made postoperative care more clear and that adverse events were handled more effectively. Currently, palliative medicine involvement in patients receiving DT is viewed as routine by cardiac care specialists. CONCLUSION: Proactive palliative medicine consultation for patients being considered for or being treated with DT improves advance care planning and thus contributes to better overall care of these patients. Our experience highlights focused advance care planning, thorough exploration of goals of care, and expert symptom management and end-of-life care when appropriate.

Palliative care and end-of-life issues in patients treated with left ventricular assist devices as destination therapy.

Left ventricular assist devices as destination therapy (DT) improve quality of life for many patients with advanced heart failure. However, DT can be associated with risks such as infection, bleeding, and stroke, and may impose psychosocial strain on patients and caregivers. Furthermore, patients treated with DT eventually will die with their device in place whether death is related to the device or not. In response to these concerns, palliative medicine consultation has been suggested with standard DT care to improve focus on quality of life, symptom management, and end-of-life planning. This article reviews key issues associated with caring for patients with DT, including psychosocial, quality-of-life, caregiving, and ethical issues, and discusses end-of-life management of patients with DT, including practical considerations, but moreover, review topics regarding communication, symptom management, and provision of appropriate comfort care.