Swetz, Keith M.

Abstract 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.

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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.

Background— Implanting centers often require the identification of a dedicated caregiver before destination therapy left ventricular assist device (DT LVAD) implantation; however, the caregiver experience surrounding this difficult decision is relatively unexplored. Methods and Results— From October 2012 through July 2013, we conducted semistructured, in-depth interviews with caregivers of patients considering DT LVAD. Data were analyzed using a mixed inductive and deductive approach. We interviewed 17 caregivers: 10 caregivers of patients living with DT LVAD, 6 caregivers of patients who had died with DT LVAD, and 1 caregiver of a patient who had declined DT LVAD. The themes identified, which could also be considered dialectical tensions, are broadly interpreted under 3 domains mapping to decision context, process, and outcome: (1) the stark decision context, with tension between hope and reality; (2) the challenging decision process, with tension between wanting loved ones to live and wanting to respect loved ones’ wishes; and (3) the downstream decision outcome, with tension between gratitude and burden. Conclusions— Decision-making surrounding DT LVAD should incorporate decision support for patients and caregivers. This should include a focus on caregiver burden and the predictable tensions that caregivers experience.

We present an unusual case of metastatic renal cell carcinoma (RCC) mimicking diverticulitis in a 76-year-old man with a 16-year history of chronic lymphocytic leukaemia (CLL) and a 2 cm left renal mass. The patient presented with severe abdominal pain and lower gastrointestinal bleeding with anticoagulation from recent pulmonary embolism. His clinical course was troubled by recurrent hospitalisations and complications that delayed investigations and potential treatments. Radiographic findings revealed stable CLL, mild sigmoid diverticulitis and a small renal mass. Small renal masses (less than 4 cm) are considered low risk for metastasising and are, thus, often observed or ablated, rather than resected. Furthermore, gastrointestinal metastases from RCC are rare. This case adds new perspective to the unpredictable nature of RCC and how synchronous malignancies may be masked in patients with long-standing CLL.

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.

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.

Pulmonary arterial hypertension (PAH) is a chronic, symptomatic, life‐threatening illness; however, it is complex, with variable expression regarding impact on quality of life (QOL). This study investigated attitudes and comfort of physicians regarding palliative care (PC) for patients with PAH and explored potential barriers to PC in PAH. An internet‐based, mixed‐methods survey was distributed to Pulmonary Hypertension Clinicians and Researchers, a professional organization within the Pulmonary Hypertension Association. Only responses from physicians involved in clinical care of patients with PAH were analyzed. Of 355 clinicians/researchers, 79 (22%) returned surveys, including 76 (21%) providers involved in clinical care. Responding physicians were mainly pulmonologists (67%), practiced in university/academic medical centers (89%), had been in practice a mean of 12 ± 7 years, cared for a median of 100 PAH patients per year, and reported a high level of confidence in managing PAH (87%), advanced PAH‐specific pharmacologic interventions (95%), and end‐of‐life care (88%). Smaller proportions were comfortable managing pain (62%) and QOL issues (78%). Most physicians (91%) reported utilizing PC consultation at least once in the prior year, primarily in the setting of end‐of‐life/active dying (59%), hospice referral (46%), or symptomatic dyspnea/impaired QOL (40%). The most frequent reasons for not referring patients to PC included nonapproval by the patient/family (51%) and concern that PC is “giving up hope” (43%). PAH may result in symptoms that impair QOL despite optimal PAH therapy; however, PC awareness and utilization for PAH providers is low. Opportunities may exist to integrate PC into care for PAH patients.