Ottenberg, Abigale L.

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.

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.

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.

BackgroundFew 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.MethodsQualitative, engaging thematic analysis. Three patient focus groups led by two trained facilitators and one semi‐structured interview guide.ResultsOf 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.ConclusionsPatients 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.

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.

BackgroundLittle is known about the use of advance directives (ADs) in patients who have implantable cardiac pacemakers (PMs).MethodsWe 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.ResultsDuring 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.ConclusionsMore 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.

Abstract 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.

AbstractEmphasis 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. Clin Trans Sci 2013; Volume 6: 40–44