Sara E. Wordingham

Dying with a Left Ventricular Assist Device as Destination Therapy

Background—Despite the ability of left ventricular assist device as destination therapy (DT-LVAD) to prolong survival for many patients with advanced heart failure, little is known about the eventual end-of-life care that patients with DT-LVAD receive. Methods and Results—All patients undergoing DT-LVAD at the Mayo Clinic in Rochester, Minnesota, from January 1, 2007, to September 30, 2014, who subsequently died before July 1, 2015, were included. Information about end-of-life care was obtained from documentation in the electronic medical record. Of 89 patients who died with a DT-LVAD, the median (25th–75th percentile) time from left ventricular assist device implantation to death was 14 (4–31) months. The most common causes of death were multiorgan failure (26%), hemorrhagic stroke (24%), and progressive heart failure (21%). Nearly half (46%) of the patients saw palliative care within 1 month before death; however, only 13 (15%) patients enrolled in hospice a median 11 (range 1–315) days before death. Most patients (78%) died in the hospital, of which 88% died in the intensive care unit. In total, 49 patients had their left ventricular assist device deactivated before death, with all but 3 undergoing deactivation in the hospital. Most patients died within an hour of left ventricular assist device deactivation and all within 26 hours. Conclusions—In contrast to the general heart failure population, most patients with DT-LVAD die in the hospital and few use hospice. Further work is needed to understand these differences and to determine whether patients with DT-LVAD are receiving optimal end-of-life care.

Deactivation of Left Ventricular Assist Devices: Differing Perspectives of Cardiology and Hospice/Palliative Medicine Clinicians.

BACKGROUND Beliefs around deactivation of a left ventricular assist device (LVAD) vary substantially among clinicians, institutions, and patients. Therefore, we sought to understand perspectives regarding LVAD deactivation among cardiology and hospice/palliative medicine (HPM) clinicians. METHODS AND RESULTS We administered a 41-item survey via electronic mail to members of 3 cardiology and 1 HPM professional societies. A convergent parallel mixed-methods design was used. From October through November 2011, 7168 individuals were sent the survey and 440 responded. Three domains emerged: (1) LVAD as a life-sustaining therapy; (2) complexities of the process of LVAD deactivation; and (3) legal and ethical considerations of LVAD deactivation. Most respondents (cardiology 92%; HPM 81%; P = .15) believed that an LVAD is a life-sustaining treatment for patients with advanced heart failure; however, 60% of cardiology vs 2% of HPM clinicians believed a patient should be imminently dying to deactivate an LVAD (P < .001). Additionally, 87% of cardiology vs 100% of HPM clinicians believed the cause of death following LVAD deactivation was from underlying disease (P < .001), with 13% of cardiology clinicians considering it to be a form of euthanasia or physician-assisted suicide. CONCLUSION Cardiology and HPM clinicians have differing perspectives regarding LVAD deactivation. Bridging the gaps and engaging in dialog between these 2 specialties is a critical first step in creating a more cohesive approach to care for LVAD patients.

Complex Care Options for Patients With Advanced Heart Failure Approaching End of Life

Care for patients with advanced cardiac disease continues to evolve in a complex milieu of therapeutic options, advanced technological interventions, and efforts at improving patient-centered care and shared decision-making. Despite improvements in quality of life and survival with these interventions, optimal supportive care across the advanced illness trajectory remains diverse and heterogeneous. Herein, we outline challenges in prognostication, communication, and caregiving in advanced heart failure and review the unique needs of patients who experience frequent hospitalizations, require chronic home inotropic support, and who have implantable cardioverter-defibrillators and mechanical circulatory support in situ, to name a few.

Palliative Care Clinicians Caring for Patients Before and After Continuous Flow-Left Ventricular Assist Device

Left ventricular assist devices (LVADs) are an available treatment option for carefully selected patients with advanced heart failure. Initially developed as a bridge to transplantation, LVADs are now also offered to patients ineligible for transplantation as destination therapy (DT). Individuals with a DT-LVAD will live the remainder of their lives with the device in place. Although survival and quality of life improve with LVADs compared with medical therapy, complications persist including bleeding, infection, and stroke. There has been increased emphasis on involving palliative care (PC) specialists in LVAD programs, specifically the DT-LVAD population, from the pre-implantation process through the end of life. Palliative care specialists are well poised to provide education, guidance, and support to patients, families, and clinicians throughout the LVAD journey. This article addresses the complexities of the LVAD population, describes key challenges faced by PC specialists, and discusses opportunities for building collaboration between PC specialists and LVAD teams.

Discordance of Patient-Reported and Clinician-Ordered Resuscitation Status in Patients Hospitalized With Acute Decompensated Heart Failure

CONTEXT Accurate documentation of preferences for cardiopulmonary resuscitation at hospital admission is critical to ensure that patients receive resuscitation or not in accordance with their wishes. OBJECTIVES We sought to identify and characterize inconsistencies in patient-reported and clinician-ordered resuscitation status in patients hospitalized with acute decompensated heart failure (ADHF). METHODS Southeastern Minnesota residents hospitalized with ADHF were prospectively enrolled into a study that included the administration of face-to-face questionnaires from January 2014 to February 2016. Patient-reported resuscitation status was assessed at enrollment using a validated question. Clinician-ordered resuscitation preferences at hospital admission were abstracted from the electronic medical record. RESULTS Of the 400 patients administered the questionnaire; 213 (53.3%) stated their resuscitation preference as Full Code, 166 (41.5%) do-not-resuscitate (DNR), and 21 (5.3%) were unsure. In comparison, clinician-ordered resuscitation status was Full Code in 263 (65.8%) patients, DNR in 133 (33.3%), and not documented in four (1.0%). Patient-reported and clinician-ordered resuscitation status was discordant in 20% of patients, of whom 5.6% elected Full Code by questionnaire and had a DNR clinician order, and 14.4% elected DNR by questionnaire but had a Full Code clinician order. Differences in age, comorbidities, health literacy, marital status, completion of advance directives, hospital length of stay, and discharge destination in patients with discordant vs. concordant resuscitation preferences were observed. CONCLUSIONS Patient-reported and clinician-ordered resuscitation preferences were discordant in 20% of patients hospitalized with ADHF. The underlying etiology of these inconsistencies may reflect factors such as patient indecisiveness or patient-clinician miscommunication and requires further exploration.

Pulmonary Hypertension and Palliative Care: What, When, Where, and Why?

Summary: Pulmonary hypertension (PH) can be associated with a high level of symptom burden from the disease as well as its treatment. Involvement of palliative care (PC) services may help facilitate discussion regarding goals of care, prognostic planning, and treatment options focused on improving quality of life (QOL). Background: PC is active total care of a patient whose disease is not fully responsive to curative therapies, with symptom control as the top priority. After a life-limiting diagnosis is made, health care teams and patients determine prognosis, whether cure is attainable or reasonable, what treatment options are available, risks and benefits of associated treatments, and how treatment or nontreatment will impact QOL and survival. QOL is often the focus of palliative interventions, with the goal to minimize symptoms and empower patients with accurate information to help affirm life and meet objectives of care. Implications for clinicians: PC can begin at the onset of symptoms in a disease t...

Ethical Analysis of Withdrawing Total Artificial Heart Support

Objectives: To describe the characteristics of patients who undergo withdrawal of total artificial heart support and to explore the ethical aspects of withdrawing this life‐sustaining treatment. Patients and Methods: We retrospectively reviewed the medical records of all adult recipients of a total artificial heart at Mayo Clinic from the programs inception in 2007 through June 30, 2015. Management of other life‐sustaining therapies, approach to end‐of‐life decision making, engagement of ethics and palliative care consultation, and causes of death were analyzed. Results: Of 47 total artificial heart recipients, 14 patients or their surrogates (30%) requested withdrawal of total artificial heart support. No request was denied by treatment teams. All 14 patients were supported with at least 1 other life‐sustaining therapy. Only 1 patient was able to participate in decision making. Conclusion: It is widely held to be ethically permissible to withdraw a life‐sustaining treatment when the treatment no longer meets the patients health care–related goals (ie, the burdens outweigh the benefits). These data suggest that some patients, surrogates, physicians, and other care providers believe that this principle extends to the withdrawal of total artificial heart support.

Can Anyone Be Prepared Enough for Life With an LVAD-DT?

Barg and colleagues (2017) thoroughly describe the experiences of patients living with left ventricular assist devices as destination therapy (LVAD-DT), highlighting how the lure of being saved by advanced technology can redefine how patients and clinicians approach treatment decisions. However, such interventions often put patients and families into a state of uncertainty regarding the future. Despite a dramatic rise in the use of lifesaving technologies, a relative paucity of information on the mediumto long-term impact of these interventions on patients and families exists. Highlighting the complexities of the patient experience and the LVAD-DT’s impact on “meaning, identity, and patient and family experience[s]” underscores a need for preimplantation education and palliative care involvement across the care continuum, preparedness planning, and expert end-of-life care. Palliative care teams, in concert with ethics consultants, frequently play a critical role in supporting patients and families during this state of “inbetweenness” and offer psychosocial support along with meticulous symptom management, focusing squarely on optimizing quality of life, despite the pervasive cultural norms that predominantly emphasize survival. This qualitative analysis further reveals patients’ uncertainty about end of life with LVAD-DT, highlighting the value of experienced clinicians being available to proactively and comprehensively address patient questions and concerns about life and death with an LVAD. Barg and colleagues identifies that “LVAD doctors” themselves may be ill-prepared or uncertain of how best to counsel patients and their loved ones for end of life with an LVAD. Despite noting this, the authors fall short in not emphasizing the crucial roles that palliative care teams play in assisting LVAD teams with more robustly addressing patient needs in this regard and in supporting patients and families from preimplantation to end of life. Supported by the International Society of Heart and Lung Transplantation Guidelines for mechanical circulatory support (Feldman et al. 2013) and the Centers for Medicare and Medicaid Services (2013) national coverage determination, increasing emphasis has been placed on involving palliative care teams in the comprehensive support of LVAD-DT patients and caregivers. Palliative care teams often possess broad expertise that make these providers prime clinicians to address advanced symptom management and longitudinal quality-of-life issues, to engage in difficult conversations, to align treatment plans with patients’ goals, and to approach end-of-life care concerns that are unique in this patient population. Furthermore, the authors cite a lack of clarity of what should be included in advance directives for patients with LVAD-DT, but concurrently make note of the importance of preparedness planning, which could be emphasized. Preparedness planning is a focused, device-specific, iterative advance care planning technique to address the unique needs of the LVAD population (Swetz et al. 2014). Further research is needed to more fully describe the impact of the Centers for Medicare and Medicaid Services mandate for palliative care involvement in LVAD-DT care teams and preparedness planning on patient outcomes, particularly in realm of decision making, quality of life, and end-of-life experiences. However, palliative care engagement throughout the care continuum is now viewed by many to be the standard of care (Luo et al. 2016; Sagin et al. 2016). Palliative care engagement in the care of LVAD-DT patients, while guideline-based, remains highly variable in scope, timing, and character (Swetz et al. 2016). Encounters can range from a brief nonprovider discussion to thorough palliative care team engagement with the patient, family, and LVAD team throughout the span of life with an LVAD. We would recommend the latter; proposing that no patient can be overprepared for life with an LVAD-DT. We recognize, however, that there are challenges to implementing this with staff availability and training. In the preimplantation phase, questions may emerge despite an “easy choice” of “death or LVAD,” leaving patients with existential concerns, for example, balancing gratitude for the possibility of life extension, with concurrent apprehension about vulnerability and potential loss of autonomy. Changes may occur in every aspect of daily life in the postimplantation phase, including changes to day-today routines, interpersonal relationships, and psychological concerns about living on a machine. Experienced

Actions Can Speak Louder Than [Written] Words: Surrogate Decision Making Based on Stated Preferences

Baek (2016) eloquently recounts the case of an unfortunate gentleman who sustained a severe neurologic insult and had a poor likelihood of meaningful neurological recovery. This report is illustrative of heart-wrenching cases encountered daily across the health care spectrum—where the surrogate’s beliefs, patient’s wishes, and lack of advance care preference documentation make clinical decisions challenging. While we support Baek’s overall conclusions and believe this case highlights many important points, we believe some issues require further clarification and exploration prior to drawing conclusions. In particular, we begin with the notion that the decision to focus on comfort care was supported despite the fact that “the patient did not have a progressive condition.” Prioritization of a comfort-directed strategy comports with the law and medical practice, whereby patients (or their surrogates) maintain not the right to die, but “the right to be left alone” and have unwanted interventions discontinued when not consistent with their goals, values or preferences. As such, the lack of a progressive condition becomes secondary in this case and many other cases like it. This case highlights the importance of both advance care planning, and how to go about shared decision making when such plans are absent. The patient was noted to have undergone tracheostomy and gastrostomy tube placement at the referring hospital prior to transfer, and Baek reports that conversations about the patient’s previously expressed preferences and values “did not occur . . . because of the haste in managing his acute state and the uncertainty of his long-term prognosis” (Baek 2016, 65) We would argue that a decision to perform these nonemergent procedures without the informed consent of the patient and/or surrogate violates a patient’s autonomy and in many situations could violate the law (Swetz, Hook, and Mueller 2013). It appears that the initial lack of shared decision making allowed for the patient to receive treatments that may have been against his previously expressed wishes,