Do patients receiving hemodialysis regret starting dialysis? A survey of affected patients
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AIMS: End-stage renal disease (ESRD) is associated with high morbidity and mortality. A prior study showed that many Canadian patients regretted their decision to start dialysis. We sought to determine if US patients also regretted dialysis. MATERIALS AND METHODS: We surveyed hemodialysis patients within 55 miles of Rochester, MN, with a 25-question survey about their perceptions of their health, preparedness for dialysis, advance care planning, and regrets about starting dialysis. Surveys were administered in person at the patients' usual dialysis session from July 1 through December 1, 2014; responses were captured electronically. RESULTS: Of the 198 eligible patients, 128 participated (70% men); 80% received dialysis for more than 1 year; 38% reported their health and 58% described their quality of life as "good" or "very good"; 51% had started dialysis in the hospital; and 68% agreed they were prepared for what to expect. Only 35% of patients reported being offered supportive care without dialysis. Most patients (82%) recalled a discussion about prognosis. Only 43% completed an advance directive, but 72% thought it was at least "very important" to plan for the end of life. Nine (7%) reported regretting the decision to start dialysis. CONCLUSIONS: Most of our patients were optimistic about their health and prognosis. Few regretted the decision to start dialysis.
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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.

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.

Preoperative testing before noncardiac surgery: guidelines and recommendations.

Preoperative testing (e.g., chest radiography, electrocardiography, laboratory testing, urinalysis) is often performed before surgical procedures. These investigations can be helpful to stratify risk, direct anesthetic choices, and guide postoperative management, but often are obtained because of protocol rather than medical necessity. The decision to order preoperative tests should be guided by the patient's clinical history, comorbidities, and physical examination findings. Patients with signs or symptoms of active cardiovascular disease should be evaluated with appropriate testing, regardless of their preoperative status. Electrocardiography is recommended for patients undergoing high-risk surgery and those undergoing intermediate-risk surgery who have additional risk factors. Patients undergoing low-risk surgery do not require electrocardiography. Chest radiography is reasonable for patients at risk of postoperative pulmonary complications if the results would change perioperative management. Preoperative urinalysis is recommended for patients undergoing invasive urologic procedures and those undergoing implantation of foreign material. Electrolyte and creatinine testing should be performed in patients with underlying chronic disease and those taking medications that predispose them to electrolyte abnormalities or renal failure. Random glucose testing should be performed in patients at high risk of undiagnosed diabetes mellitus. In patients with diagnosed diabetes, A1C testing is recommended only if the result would change perioperative management. A complete blood count is indicated for patients with diseases that increase the risk of anemia or patients in whom significant perioperative blood loss is anticipated. Coagulation studies are reserved for patients with a history of bleeding or medical conditions that predispose them to bleeding, and for those taking anticoagulants. Patients in their usual state of health who are undergoing cataract surgery do not require preoperative testing.

Deprescribing in Hospice Patients: Discontinuing Aspirin, Multivitamins, and Statins.

OBJECTIVE: To facilitate deprescribing of aspirin, multivitamins, and statins in hospice patients enrolled in Mayo Clinic Hospice, Rochester, Minnesota. PATIENTS AND METHODS: During the fall of 2019, we conducted a quality improvement project to improve care of Mayo Clinic Hospice patients by decreasing the percentage of patients taking aspirin, multivitamins, or statins. Project interventions included the addition of a palliative medicine fellow to the hospice interdisciplinary team, nurse education, and implementation of an evidence-based deprescribing resource tool. The resource tool included a communication framework to guide deprescribing conversations and a literature summary supporting deprescribing. The project team recorded the number of patients taking 1 of these medications by intermittently surveying the hospice census. Process and counterbalance measures were tracked with online surveys of hospice nursing staff. RESULTS: At the start of the project, 22 of 69 patients (32%) were taking aspirin, a multivitamin, or a statin. After introduction of the deprescribing resource tool and the addition of a palliative medicine fellow to the interdisciplinary team, this was reduced to 20 of 83 patients (24%), a 24% decrease. Results appeared to be driven primarily by a reduction in multivitamin use (33% decrease). Self-reported comfort and knowledge about deprescribing improved among the hospice nursing staff, as did satisfaction in their workflow from 5.4 to 6.0 (maximum, 7). CONCLUSION: The addition of a dedicated team member to address medication issues and provision of an evidence-based deprescribing resource tool appear to reduce the use of unnecessary and potentially harmful medications in ambulatory hospice patients.

Resurgence of Eating Disorders with Olanzapine.

BACKGROUND: Olanzapine is commonly utilized in palliative care for the treatment of nausea, and a known side effect of olanzapine is increased appetite. Olanzapine is also known to cause re-emergence of eating disorders (EDs) in patients utilizing olanzapine for its antipsychotic effects. It is unclear to what extent this may also occur in patients with serious/life-limiting illness. METHODS AND RESULTS: We present a case of a 70-year-old female with recurrent ovarian cancer and a history of bulimia nervosa (BN) that developed resurgence of her BN after initiation of olanzapine for cancer-associated nausea. Her BN resolved with reducing the dose of olanzapine. CONCLUSION: It is important to recognize that recurrence of EDs can occur when using olanzapine in the palliative care setting.

Prediction of Risk of Death for Patients Starting Dialysis: A Systematic Review and Meta-Analysis.

BACKGROUND AND OBJECTIVES: Dialysis is a preference-sensitive decision where prognosis may play an important role. Although patients desire risk prediction, nephrologists are wary of sharing this information. We reviewed the performance of prognostic indices for patients starting dialysis to facilitate bedside translation. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: Systematic review and meta-analysis following the PRISMA guidelines. We searched Ovid MEDLINE, Ovid Embase, Ovid Central Register of Controlled Trials, Ovid Cochrane Database of Systematic Reviews, and Scopus for eligible studies of patients starting dialysis published from inception to December 31, 2018. SELECTION CRITERIA: Articles describing validated prognostic indices predicting mortality at the start of dialysis. We excluded studies limited to prevalent dialysis patients, AKI and studies excluding mortality in the first 1-3 months. Two reviewers independently screened abstracts, performed full text assessment of inclusion criteria and extracted: study design, setting, population demographics, index performance and risk of bias. Pre-planned random effects meta-analysis was performed stratified by index and predictive window to reduce heterogeneity. RESULTS: Of 12,132 articles screened and 214 reviewed in full text, 36 studies were included describing 32 prognostic indices. Predictive windows ranged from 3 months to 10 years, cohort sizes from 46 to 52,796. Meta-analysis showed discrimination area under the curve (AUC) of 0.71 (95% confidence interval, 0.69 to 073) with high heterogeneity (I2=99.12). Meta-analysis by index showed highest AUC for The Obi, Ivory, and Charlson comorbidity index (CCI)=0.74, also CCI was the most commonly used (ten studies). Other commonly used indices were Kahn-Wright index (eight studies, AUC 0.68), Hemmelgarn modification of the CCI (six studies, AUC 0.66) and REIN index (five studies, AUC 0.69). Of the indices, ten have been validated externally, 16 internally and nine were pre-existing validated indices. Limitations include heterogeneity and exclusion of large cohort studies in prevalent patients. CONCLUSIONS: Several well validated indices with good discrimination are available for predicting survival at dialysis start.

End of Life, Withdrawal, and Palliative Care Utilization among Patients Receiving Maintenance Hemodialysis Therapy.

BACKGROUND AND OBJECTIVES: Withdrawal from maintenance hemodialysis before death has become more common because of high disease and treatment burden. The study objective was to identify patient factors and examine the terminal course associated with hemodialysis withdrawal, and assess patterns of palliative care involvement before death among patients on maintenance hemodialysis. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: We designed an observational cohort study of adult patients on incident hemodialysis in a midwestern United States tertiary center, from January 2001 to November 2013, with death events through to November 2015. Logistic regression models evaluated associations between patient characteristics and withdrawal status and palliative care service utilization. RESULTS: Among 1226 patients, 536 died and 262 (49% of 536) withdrew. A random sample (10%; 52 out of 536) review of Death Notification Forms revealed 73% sensitivity for withdrawal. Risk factors for withdrawal before death included older age, white race, palliative care consultation within 6 months, hospitalization within 30 days, cerebrovascular disease, and no coronary artery disease. Most withdrawal decisions were made by patients (60%) or a family member (33%; surrogates). The majority withdrew either because of acute medical complications (51%) or failure to thrive/frailty (22%). After withdrawal, median time to death was 7 days (interquartile range, 4-11). In-hospital deaths were less common in the withdrawal group (34% versus 46% nonwithdrawal, P=0.003). A third (34%; 90 out of 262) of those that withdrew received palliative care services. Palliative care consultation in the withdrawal group was associated with longer hemodialysis duration (odds ratio, 1.19 per year; 95% confidence interval, 1.10 to 1.3; P<0.001), hospitalization within 30 days of death (odds ratio, 5.78; 95% confidence interval, 2.62 to 12.73; P<0.001), and death in hospital (odds ratio, 1.92; 95% confidence interval, 1.13 to 3.27; P=0.02). CONCLUSIONS: In this single-center study, the rate of hemodialysis withdrawals were twice the frequency previously described. Acute medical complications and frailty appeared to be driving factors. However, palliative care services were used in only a minority of patients.

Prevalence and Contents of Advance Directives of Patients with ESRD Receiving Dialysis.

BACKGROUND AND OBJECTIVES: ESRD requiring dialysis is associated with increased morbidity and mortality rates, including increased rates of cognitive impairment, compared with the general population. About one quarter of patients receiving dialysis choose to discontinue dialysis at the end of life. Advance directives are intended to give providers and surrogates instruction on managing medical decision making, including end of life situations. The prevalence of advance directives is low among patients receiving dialysis. Little is known about the contents of advance directives among these patients with advance directives. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: We retrospectively reviewed the medical records of all patients receiving maintenance in-center hemodialysis at a tertiary academic medical center between January 1, 2007 and January 1, 2012. We collected demographic data, the prevalence of advance directives, and a content analysis of these advance directives. We specifically examined the advance directives for instructions on management of interventions at end of life, including dialysis. RESULTS: Among 808 patients (mean age of 68.6 years old; men =61.2%), 49% had advance directives, of which only 10.6% mentioned dialysis and only 3% specifically addressed dialysis management at end of life. Patients who had advance directives were more likely to be older (74.5 versus 65.4 years old; P<0.001) and have died during the study period (64.4% versus 46.6%; P<0.001) than patients who did not have advance directives. Notably, for patients receiving dialysis who had advance directives, more of the advance directives addressed cardiopulmonary resuscitation (44.2%), mechanical ventilation (37.1%), artificial nutrition and hydration (34.3%), and pain management (43.4%) than dialysis (10.6%). CONCLUSIONS: Although one-half of the patients receiving dialysis in our study had advance directives, end of life management of dialysis was rarely addressed. Future research should focus on improving discernment and documentation of end of life values, goals, and preferences, such as dialysis-specific advance directives, among these patients.

Palliative Sedation and What Constitutes Active Dying: A Case of Severe Progressive Dystonia and Intractable Pain.

We present the case of a 34-year-old woman with Klippel-Feil syndrome who developed progressive generalized dystonia of unclear etiology, resulting in intractable pain despite aggressive medical and surgical interventions. Ultimately, palliative sedation was required to relieve suffering. Herein, we describe ethical considerations including defining sedation, determining prognosis in the setting of an undefined neurodegenerative condition, and use of treatments that concurrently might prolong or alter end-of-life trajectory. We highlight pertinent literature and how it may be applied in challenging and unique clinical situations. Finally, we discuss the need for expert multidisciplinary involvement when implementing palliative sedation and illustrate that procedures and rules need to be interpreted to deliver optimal patient-centered plan of care.

Reengineering Dialysis: The Role of Palliative Medicine.

BACKGROUND: End-stage renal disease is a life-limiting illness associated with significant morbidity. Half of all individuals with end-stage renal disease are unable to participate in decision making at the end of life, which makes advance care planning critical in this population. OBJECTIVE: We sought to determine the feasibility of embedding palliative medicine consultations in the hemodialysis unit during treatment runs and the impact of this intervention on advance care planning and symptom management. DESIGN: Single-center, prospective cohort study. SETTING/SUBJECTS: Adults receiving in-center hemodialysis at a single outpatient unit were eligible. All consultations occurred during the patients' hemodialysis runs between January 1 and June 30, 2012. MEASUREMENT: Medical records were reviewed for documentation of advance directives, resuscitation status, and goals of care discussions before and after palliative medicine intervention. Symptom surveys with the Modified Edmonton Symptom Assessment Scale (validated for end-stage renal disease) were performed preintervention and postintervention. RESULTS: Ninety-two patients were eligible; 91 underwent palliative medicine consultation. Symptoms were well controlled at baseline prior to any intervention. After palliative medicine consultation, the prevalence of unknown code status decreased from 23% to 1% and goals of care documentation improved from 3% to 59%. CONCLUSION: Palliative medicine consultation during in-center outpatient hemodialysis was well received by patients and clinical staff. Patients' symptoms were well managed at baseline by the primary nephrology team. The frequency of goals of care documentation and clarification of code status improved significantly. Embedded palliative medicine specialists on the dialysis care team may be effective in improving multidisciplinary patient-centered care for patients with end-stage renal disease.

A systematic approach to the preoperative medical evaluation of adults.

The number, age, and medical complexity of patients undergoing elective noncardiac surgery is rising worldwide. Internists, family physicians, and midlevel providers asked to perform preoperative medical evaluations. However, lack of consensus has led to wide variation in practice in what is included and addressed in these evaluations, and the efficacy of these assessments has been debated. The intended purpose of the evaluation seems to be universally accepted as aiming to assess and identify risks associated with the patient's comorbid medical conditions and the specific surgical procedure. The goal is to minimize those risks. Herein, we propose a systematic approach to the preoperative medical evaluation based on the best available evidence and expert opinion, with an emphasis on identifying all potentially pertinent patient- and surgery-specific risk factors.

Preparedness planning before mechanical circulatory support: a "how-to" guide for palliative medicine clinicians.

The role of palliative medicine in the care of patients with advanced heart failure, including those who receive mechanical circulatory support, has grown dramatically in the last decade. Previous literature has suggested that palliative medicine providers are well poised to assist cardiologists, cardiothoracic surgeons, and the multidisciplinary cardiovascular team with promotion of informed consent and initial and iterative discussions regarding goals of care. Although preparedness planning has been described previously, the actual methods that can be used to complete a preparedness plan have not been well defined. Herein, we outline several key aspects of this approach and detail strategies for engaging patients who are receiving mechanical circulatory support in preparedness planning.

Safety of clopidogrel in hip fracture surgery.

OBJECTIVE: To compare postoperative outcomes of hip fracture surgery in patients who were and were not taking clopidogrel at the time of surgery. PATIENTS AND METHODS: Using the Rochester Epidemiology Project database, we performed a population-based, retrospective cohort study comparing patients who were and were not taking clopidogrel at the time of hip fracture surgery between January 1, 1996, and June 30, 2010. Primary outcomes were perioperative bleeding and mortality. Secondary outcomes were perioperative thrombotic events. RESULTS: During the study period, 40 residents of Olmsted County, Minnesota (median age, 83 years), who were taking clopidogrel underwent hip fracture repair. These 40 patients were matched 2:1 with 80 control patients (median age, 84 years). The groups were similar in age, sex, American Society of Anesthesiologists score, type of surgical procedure, and use of deep venous thrombosis prophylaxis. The mean time from admission to surgery was less than 36 hours for each cohort. Perioperative bleeding complications and mortality were not significantly different between patients who were and were not taking clopidogrel at the time of hip fracture surgery. Combined bleeding outcome criteria was met in 48% of the clopidogrel cohort and 45% of the control cohort (relative risk, 1.06; 95% CI, 0.70-1.58; P=.80). One-year mortality was 28% in the clopidogrel cohort and 29% in the control cohort (hazard ratio, 1.33; 95% CI, 0.84-2.12; P=.23). CONCLUSION: Although the small sample size precludes making a definitive conclusion, we found no evidence that prompt surgical treatment of hip fracture in patients taking clopidogrel compromises perioperative outcomes.