Differences between patients with cardiovascular disease and cancer referred for palliative care.

Our analysis from a national registry shows that compared to cancer, cardiovascular disease patients referred to palliative care are a decade older, have worse functional status and clinician-estimated prognosis. Both groups have very high symptom burden, with cardiovascular disease patients experiencing more dyspnea while pain, nausea, and fatigue are more common in cancer.

Non-Concordance between Patient and Clinician Estimates of Prognosis in Advanced Heart Failure.

IMPORTANCE: Despite efforts to enhance serious illness communication, patients with advanced heart failure (HF) lack prognostic understanding. OBJECTIVES: To determine rate of concordance between HF patients' estimation of their prognosis and their physician's estimate of the patient's prognosis, and to compare patient characteristics associated with concordance. DESIGN: Cross-sectional analysis of a cluster randomized controlled trial with 24-month follow-up and analysis completed on 09/01/2020. Patients were enrolled in inpatient and outpatient settings between September 2011 to February 2016 and data collection continued until the last quarter of 2017. SETTING: Six teaching hospitals in the U.S. PARTICIPANTS: Patients with advanced HF and implantable cardioverter defibrillators (ICDs) at high risk of death. Of 537 patients in the parent study, 407 had complete data for this analysis. INTERVENTION: A multi-component communication intervention on conversations between HF clinicians and their patients regarding ICD deactivation and advance care planning. MAIN OUTCOME(S) AND MEASURE(S): Patient self-report of prognosis and physician response to the "surprise question" of 12-month prognosis. Patient-physician prognostic concordance (PPPC) measured in percentage agreement and kappa. Bivariate analyses of characteristics of patients with and without PPPC. RESULTS: Among 407 patients (mean age 62.1 years, 29.5% female, 42.4% non-white), 300 (73.7%) dyads had non-PPPC; of which 252 (84.0%) reported a prognosis >1 year when their physician estimated <1 year. Only 107 (26.3%) had PPPC with prognosis of ≤ 1 year (n=20 patients) or > 1 year (n=87 patients); (Κ = -0.20, p = 1.0). Of those with physician estimated prognosis of < 1 year, non-PPPC was more likely among patients with lower symptom burden- number and severity (both p ≤.001), without completed advance directive (p=.001). Among those with physician prognosis estimate > 1 year, no patient characteristic was associated with PPPC or non-PPPC. CONCLUSIONS AND RELEVANCE: Non-PPPC between HF patients and their physicians is high. HF patients are more optimistic than clinicians in estimating life expectancy. These data demonstrate there are opportunities to improve the quality of prognosis disclosure between patients with advanced HF and their physicians. Interventions to improve PPPC might include serious illness communication training.

Home Therapies in Advanced Heart Failure: Inotropes and Diuretics.

PURPOSE OF REVIEW: Heart failure (HF) is a significant cause of morbidity, mortality, and decreased quality of life (QOL). Symptoms, including reduced activity tolerance, fatigue, palpitations, and dyspnea, result from volume overload or low output states. Herein, we review the best available literature supporting diuretic and inotropic therapies in advanced HF and how these improve QOL. RECENT FINDINGS: While diuretics and inotropes reduce symptoms and hospitalizations in advanced HF, there is an increased risk of harms with both modalities. While diuretic complications include electrolyte and renal function abnormalities, adverse event data with inotropes is more complex and includes possible arrhythmias and death. Further, inotrope utilization is complicated by required intravenous access, infusion costs, and limited outpatient support. Ambulatory use of diuretics and inotropes may improve patients' QOL through symptom management and reduced hospitalizations. However, risks and limitations of both modalities must be considered as treatment decisions are made.

Palliative Care.

Palliative care prioritizes symptom management and quality of life throughout the course of serious illness. Regardless of whether care is inpatient or outpatient, primary or subspecialty, a solid understanding of the basics of effective communication, symptom management, and end-of-life care is crucial. This article reviews these essentials and provides an overview of current evidence to support patient-centered palliative care.

Respecting Autonomy and Promoting the Patient's Good in the Setting of Serious Terminal and Concurrent Mental Illness.

Background: Clinicians at the bedside regularly encounter surprises or unexpected clinical developments that carry emotional, social, or moral overtones-especially when death is anticipated or when patients are particularly vulnerable. In such circumstances, clinicians may struggle to find practical clarity in making treatment plans that honor their fiduciary (literally, "entrusted") duty to uphold equitably the ethical principles of beneficence, nonmaleficence, patient autonomy, and justice. Methods: We present the case of a patient who appeared to be actively dying and received an indwelling urinary catheter for the purpose of ensuring comfort. However, it led to an unintended reversal of renal failure and exacerbation of underlying psychiatric disease. This led to a meaningful change in the patient's prognosis. It also created pragmatic challenges to shared decision making, which required an intentional interdisciplinary approach to balancing beneficence and patient autonomy. Conclusion: Palliative Care offers a holistic clinical approach to complex suffering. Palliative care specialists develop advanced skill sets in prognosis estimation, nuanced communication issues, and patient-centered goal setting. As this case highlights, prognosis can shift dramatically in the perimortem period, even with small changes in care plans. This case presented several biomedical, social-cultural, and ethical challenges to the team. Lessons from the case are presented regarding: the role a specialist palliative team might play throughout all stages of serious illness; approaching prognostication as an iterative rather than solitary task; and utilizing an ethical framework to care planning when there are barriers to shared decision making.

Developing a "toolkit" to measure implementation of concurrent palliative care in rural community cancer centers.

OBJECTIVE: Despite national guidelines recommending early concurrent palliative care for individuals newly diagnosed with metastatic cancer, few community cancer centers, especially those in underserved rural areas do so. We are implementing an early concurrent palliative care model, ENABLE (Educate, Nurture, Advise, Before Life Ends) in four, rural-serving community cancer centers. Our objective was to develop a "toolkit" to assist community cancer centers that wish to integrate early palliative care for patients with newly diagnosed advanced cancer and their family caregivers. METHOD: Guided by the RE-AIM (Reach, Effectiveness-Adoption, Implementation, Maintenance) framework, we undertook an instrument-development process based on the literature, expert and site stakeholder review and feedback, and pilot testing during site visits. RESULTS: We developed four instruments to measure ENABLE implementation: (1) the ENABLE RE-AIM Self-Assessment Tool to assess reach, adoption, implementation, and maintenance; (2) the ENABLE General Organizational Index to assess institutional implementation; (3) an Implementation Costs Tool; and (4) an Oncology Clinicians' Perceptions of Early Concurrent Oncology Palliative Care survey. SIGNIFICANCE OF RESULTS: We developed four measures to determine early palliative care implementation. These measures have been pilot-tested, and will be integrated into a comprehensive "toolkit" to assist community cancer centers to measure implementation outcomes. We describe the lessons learned and recommend strategies for promoting long-term program sustainability.

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.

Engaging patients and families to create a feasible clinical trial integrating palliative and heart failure care: results of the ENABLE CHF-PC pilot clinical trial.

BACKGROUND: Early palliative care (EPC) is recommended but rarely integrated with advanced heart failure (HF) care. We engaged patients and family caregivers to study the feasibility and site differences in a two-site EPC trial, ENABLE CHF-PC (Educate, Nurture, Advise, Before Life Ends Comprehensive Heartcare for Patients and Caregivers). METHODS: We conducted an EPC feasibility study (4/1/14-8/31/15) for patients with NYHA Class III/IV HF and their caregivers in academic medical centers in the northeast and southeast U.S. The EPC intervention comprised: 1) an in-person outpatient palliative care consultation; and 2) telephonic nurse coach sessions and monthly calls. We collected patient- and caregiver-reported outcomes of quality of life (QOL), symptom, health, anxiety, and depression at baseline, 12- and 24-weeks. We used linear mixed-models to assess baseline to week 24 longitudinal changes. RESULTS: We enrolled 61 patients and 48 caregivers; between-site demographic differences included age, race, religion, marital, and work status. Most patients (69%) and caregivers (79%) completed all intervention sessions; however, we noted large between-site differences in measurement completion (38% southeast vs. 72% northeast). Patients experienced moderate effect size improvements in QOL, symptoms, physical, and mental health; caregivers experienced moderate effect size improvements in QOL, depression, mental health, and burden. Small-to-moderate effect size improvements were noted in patients' hospital and ICU days and emergency visits. CONCLUSIONS: Between-site demographic, attrition, and participant-reported outcomes highlight the importance of intervention pilot-testing in culturally diverse populations. Observations from this pilot feasibility trial allowed us to refine the methodology of an in-progress, full-scale randomized clinical efficacy trial. TRIAL REGISTRATION: Clinicaltrials.gov NCT03177447 (retrospectively registered, June 2017).

Pediatric Cardiology Provider Attitudes About Palliative Care: A Multicenter Survey Study.

While availability of palliative care consultation for children with advanced heart disease increases, little is known about cardiologist attitudes towards palliative care. We sought to describe perspectives of cardiologists regarding palliative care and to characterize their perceived competence in palliative care concepts. A cross-sectional survey of pediatric cardiologists and cardiac surgeons from 19 pediatric medical centers was performed. Overall response rate was 31% (183/589). Respondents had a median of 18 years of experience since medical school (range 2-49) and most practiced at academic centers (91%). Sixty-percent of respondents felt that palliative care consultations occur "too late" and the majority (85%) agreed that palliative care consultations are helpful. Barriers to requesting palliative care consultation were most frequently described as "referring to palliative care services too early will undermine parents' hope" (45%) and "concern that parents will think I am giving up on their child" (56%). Only 33% of cardiologists reported feeling "very" or "moderately" competent in prognosticating life expectancy while over 60% felt competent caring for children with heart disease around end of life, and nearly 80% felt competent discussing goals of care and code status. Greater perceived competence was associated with subspecialty (heart failure/intensivist vs. other) (OR 3.6, 95% CI 1.6-8.1, p = 0.003) and didactic training (OR 6.27, 95% CI 1.8-21.8, p = 0.004). These results underscore the need for further training in palliative care skills for pediatric cardiologists. Enhancing palliative care skills among cardiologists and facilitating partnership with subspecialty palliative care teams may improve overall care of children with advanced heart disease.

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.

A video to improve patient and surrogate understanding of cardiopulmonary resuscitation choices in the ICU: a randomized controlled trial.

OBJECTIVE: To determine if a video depicting cardiopulmonary resuscitation and resuscitation preference options would improve knowledge and decision making among patients and surrogates in the ICU. DESIGN: Randomized, unblinded trial. SETTING: Single medical ICU. PATIENTS: Patients and surrogate decision makers in the ICU. INTERVENTIONS: The usual care group received a standard pamphlet about cardiopulmonary resuscitation and cardiopulmonary resuscitation preference options plus routine code status discussions with clinicians. The video group received usual care plus an 8-minute video that depicted cardiopulmonary resuscitation, showed a simulated hospital code, and explained resuscitation preference options. MEASUREMENTS AND MAIN RESULTS: One hundred three patients and surrogates were randomized to usual care. One hundred five patients and surrogates were randomized to video plus usual care. Median total knowledge scores (0-15 points possible for correct answers) in the video group were 13 compared with 10 in the usual care group, p value of less than 0.0001. Video group participants had higher rates of understanding the purpose of cardiopulmonary resuscitation and resuscitation options and terminology and could correctly name components of cardiopulmonary resuscitation. No statistically significant differences in documented resuscitation preferences following the interventions were found between the two groups, although the trial was underpowered to detect such differences. A majority of participants felt that the video was helpful in cardiopulmonary resuscitation decision making (98%) and would recommend the video to others (99%). CONCLUSIONS: A video depicting cardiopulmonary resuscitation and explaining resuscitation preference options was associated with improved knowledge of in-hospital cardiopulmonary resuscitation options and cardiopulmonary resuscitation terminology among patients and surrogate decision makers in the ICU, compared with receiving a pamphlet on cardiopulmonary resuscitation. Patients and surrogates found the video helpful in decision making and would recommend the video to others.

A survey of clinician attitudes and self-reported practices regarding end-of-life care in heart failure.

BACKGROUND: As heart failure often follows an unpredictable clinical trajectory, there has been an impetus to promote iterative patient-provider discussions regarding prognosis and preferences for end-of-life care. AIM: To examine clinicians' practices, expectations, and personal level of confidence in discussing goals of care and providing end-of-life care to their patients with heart failure. DESIGN: Multi-site clinician survey. SETTING AND PARTICIPANTS: Physicians, nurse practitioners, and physician assistants at Mayo Clinic (Rochester, Minnesota, USA) and its surrounding health system were asked to participate in an electronic survey in October 2013. Tertiary Care Cardiology, Community Cardiology, and Primary Care clinicians were surveyed. RESULTS: A total of 95 clinicians participated (52.5% response rate). Only 12% of clinicians reported having annual end-of-life discussions as advocated by the American Heart Association. In total, 52% of clinicians hesitated to discuss end-of-life care citing provider discomfort (11%), perception of patient (21%) or family (12%) unreadiness, fear of destroying hope (9%), or lack of time (8%). Tertiary and Community Cardiology clinicians (66%) attributed responsibility for end-of-life discussions to the heart failure cardiologist, while 66% of Primary Care clinicians felt it was their responsibility. Overall, 30% of clinicians reported a low or very low level of confidence in one or more of the following: initiating prognosis or end-of-life discussions, enrolling patients in hospice, or providing end-of-life care. Most clinicians expressed interest in further skills acquisition. CONCLUSION: Clinicians vary in their views and approaches to end-of-life discussions and care. Some lack confidence and most are interested in further skills acquisition.

Team-based Palliative and End-of-life Care for Heart Failure.

Clinical practice guidelines endorse the use of palliative care in patients with symptomatic heart failure. Palliative care is conceptualized as supportive care afforded to most patients with chronic, life-limiting illness. However, the optimal content and delivery of palliative care interventions remains unknown and its integration into existing heart failure disease management continues to be a challenge. Therefore, this article comments on the current state of multidisciplinary care for such patients, explores evidence supporting a team-based approach to palliative and end-of-life care for patients with heart failure, and identifies high-priority areas for research.

Ethical challenges with hemodialysis patients who lack decision-making capacity: behavioral issues, surrogate decision-makers, and end-of-life situations.

Hemodialysis (HD) is routinely offered to patients with end-stage renal disease in the United States who are ineligible for other renal replacement modalities. The frequency of HD among the US population is greater than all other countries, except Taiwan and Japan. In US, patients are often dialyzed irrespective of age, comorbidities, prognosis, or decision-making capacity. Determination of when patients can no longer dialyze is variable and can be dialysis-center specific. Determinants may be related to progressive comorbidities and frailty, mobility or access issues, patient self-determination, or an inability to tolerate the treatment safely for any number of reasons (e.g., hypotension, behavioral issues). Behavioral issues may impact the safety of not only patients themselves, but also those around them. In this article the authors present the case of an elderly patient on HD with progressive cognitive impairment and combative behavior placing him and others at risk of physical harm. The authors discuss the medical, ethical, legal, and psychosocial challenges to care of such patients who lack decision-making capacity with a focus on variable approaches by regions and culture. This manuscript provides recommendations and highlights resources to assist nephrologists, dialysis personnel, ethics consultants, and palliative medicine teams in managing such patients to resolve conflict.

"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.

The growth of palliative care.

Palliative care specialists focus on meeting the needs of patients with serious and/or life-threatening illnesses. These physicians have expertise in managing complex pain and nonpain symptoms, providing psychosocial and spiritual support to patients and their families, and communicating about complex topics and advance care planning. The American Board of Medical Specialties has allowed 10 of its member boards to co-sponsor certification in Hospice and Palliative Medicine. Thus, physicians from specialties ranging from pediatrics to surgery now practice hospice and palliative medicine. At the core of this field, however, are physicians who trained as internists and are boarded by the American Board of Internal Medicine. This article discusses the central principles of palliative care and explores its growth in two areas: oncology and critical care medicine.

Dialysis in the frail elderly--a current ethical problem, an impending ethical crisis.

The current practice of hemodialysis for the frail elderly frequently ignores core bioethical principles. Lack of transparency and shared decision making coupled with financial incentives to treat have resulted in problems of overtreatment near the end of life. Imminent changes in reimbursement for hemodialysis will reverse the financial incentives to favor not treating high-risk patients. In this article, we describe what is empirically known about the approach to hemodialysis today, and how it violates four core ethical principles. We then discuss how the new financial system turns physician and organizational incentives upside down in ways that may exacerbate the ethical dilemmas, but in the opposite direction.

Patient and doctor attitudes and beliefs concerning perioperative do not resuscitate orders: anesthesiologists' growing compliance with patient autonomy and self determination guidelines.

BACKGROUND: In 1993, the American Society of Anesthesiologists (ASA) published guidelines stating that automatic perioperative suspension of Do Not Resuscitate (DNR) orders conflicts with patients' rights to self-determination. Almost 20 years later, we aimed to explore both patient and doctor views concerning perioperative DNR status. METHODS: Five-hundred consecutive patients visiting our preoperative evaluation clinic were surveyed and asked whether they had made decisions regarding resuscitation and to rate their agreement with several statements concerning perioperative resuscitation. Anesthesiologists, surgeons and internists at our tertiary referral institution were also surveyed. They were asked to assess their likelihood of following a hypothetical patient's DNR status and to rate their level of agreement with a series of non-scenario related statements concerning ethical and practical aspects of perioperative resuscitation. RESULTS: Over half of patients (57%) agreed that pre-existing DNR requests should be suspended while undergoing a surgical procedure under anesthesia, but 92% believed a discussion between the doctor and patient regarding perioperative resuscitation plans should still occur. Thirty percent of doctors completing the survey believed that DNR orders should automatically be suspended intraoperatively. Anesthesiologists (18%) were significantly less likely to suspend DNR orders than surgeons (38%) or internists (34%) (p < 0.01). CONCLUSIONS: Although many patients agree that their DNR orders should be suspended for their operation, they expect a discussion regarding the performance and nature of perioperative resuscitation. In contrast to previous studies, anesthesiologists were least likely to automatically suspend a DNR order.