Development and feasibility of a communication training to assist caregivers with advanced care planning.

OBJECTIVE: Caregivers are critical in advanced care planning (ACP) discussions, which are difficult but necessary to carry out patients' goals of care. We developed and evaluated the feasibility and acceptability of a communication training to equip caregivers of patients with malignant brain tumors with skills to navigate ACP conversations. METHOD: Caregivers completed a 2-h virtual training addressing ACP Discussions with Your Loved One and ACP Discussions with the Medical Team. A pre-training assessment was completed at baseline and a training evaluation was completed one day post-training. A subset of participants completed semi-structured interviews 2 months post-training. RESULTS: Of 15 caregivers recruited, 9 attended the training and 4 completed qualitative interviews. Post-training, 40% felt confident in discussing ACP with loved ones and 67% felt confident doing so with healthcare professionals; 100% reported feeling confident in using skills learned in the training to facilitate these conversations. Data from qualitative interviews highlighted additional benefits of the training in empathic communication skills and fostering social support. SIGNIFICANCE OF RESULTS: Our communication skills training shows promise in supporting caregivers' skills and confidence in engaging in ACP discussions with patients and healthcare providers. A future randomized controlled trial with a larger and more diverse caregiving sample is needed to determine training efficacy.

Congenital cardiac liver cirrhosis with combined hepatocellular-cholangiocarcinoma-a case report.

Background: Cardiac liver cirrhosis secondary to Fontan procedure has been associated with hepatocellular carcinoma at a younger age. However, Fontan associated liver disease and combined hepatocellular-cholangiocarcinoma has not been previously reported. Combined hepatocellular-cholangiocarcinoma is a rare cancer that accounts for 2-5% of primary liver tumors and poses significant diagnostic and treatment challenges. This case highlights these needs and potential screening and treatment considerations. Herein we describe a case of combined hepatocellular-cholangiocarcinoma in a patient with autism, congenital heart disease, and Fontan procedure. Case Description: The patient is a 27-year-old male who presented with a liver mass detected on MRI performed in the context of a rising alpha-fetoprotein during a screening visit. Biopsy of the mass revealed a combined hepatocellular-cholangiocarcinoma which was staged as localized. Due to the COVID-19 pandemic and subsequent halt of all elective surgeries, the patient received local therapy with chemoembolization followed by pembrolizumab. The disease progressed though, and therapy was changed to gemcitabine plus cisplatin. Patient received 2 cycles of therapy, after which he and his family decided to transfer medical care to Memorial Sloan Kettering. Next generation sequencing of the tumor revealed TP53 and FGFR2 mutations. By then patient was also found to have lung metastasis. To help address the hepatocellular carcinoma, lenvatinib was added. Patient had sustainable disease control for about a year, yet eventually developed thrombocytopenia complicated by an episode of gastrointestinal bleeding. With a worsening performance status, adverse events of the treatment, and recurrent hospitalizations, a goals of care discussion with his family led to the discontinuation of active cancer therapy and patient was started on best supportive care. Patient remained in active follow-up until the time of this report and passed away less than a year from initiating best supportive care alone. Conclusions: This challenging case raises awareness towards screening and monitoring all patients with Fontan procedure for Fontan associated liver disease and liver cancers, including combined hepatocellular-cholangiocarcinoma. To the best of our knowledge, this is the first description of combined hepatocellular-cholangiocarcinoma occurring in the context of cardiac cirrhosis. The management difficulties that led to altering the goals of care, is another reminder of the dynamic nature of the care oncologists would provide.

Ethics consultations in neuro-oncology.

BACKGROUND: Management of patients with brain tumors can lead to ethical and decisional dilemmas. The aim of this study was to characterize ethical conflicts encountered in neuro-oncologic patients. METHODS: Retrospective review of ethics consultations performed upon patients with primary and metastatic brain tumors at a tertiary cancer center. An ethics consultation database was examined to characterize ethical conflicts, contextual factors, and interventions by the consultation team. RESULTS: Fifty consultations were reviewed; 28 (56%) patients were women, median age 54 (range 4-86); 27 (54%) patients had a primary central nervous system malignancy; 20 (40%) had brain metastasis. At the time of consultations, 41 (82%) patients lacked decisional capacity; 48 (96%) had a designated surrogate decision maker; 3 (6%) had an advance directive outlining wishes regarding medical treatment; 12 (24%) had a Do Not Attempt Resuscitation (DNAR) order. Ethical conflicts centered upon management of end-of-life (EOL) circumstances in 37 (72%) of cases; of these, 30 did not have decisional capacity. The most common ethical issues were DNAR status, surrogate decision making, and request for nonbeneficial treatment. Consultants resolved conflicts by facilitating decision making for incapacitated patients in 30 (60%) cases, communication between conflicting parties in 10 (20%), and re-articulation of patients' previously stated wishes in 6 (12%). CONCLUSIONS: Decisional capacity at EOL represents the primary ethical challenge in care of neuro-oncologic patients. Incomplete awareness among surrogate decision makers of patients' prognosis and preferences contributes to communication gaps and dilemmas. Early facilitation of communication between patients, caregivers, and medical providers may prevent or mitigate conflicts and allow the enactment of patients' goals and values.

End of life: Expert care and support, not physician-hastened death.

In legal physician-hastened death, a physician prescribes medication with the primary intent of causing the death of a willing terminally ill patient. This practice differs radically from palliative sedation, intended to relieve a patient's suffering rather than cause a patient's death. In this position paper, we argue that the practice of physician-hastened death is contrary to the interests of patients, their families, and the sound ethical practice of medicine. Therefore, the American Academy of Neurology should advise its members against this practice, as it had done until 2018.

Neuropalliative care: Priorities to move the field forward.

Neuropalliative care is an emerging subspecialty in neurology and palliative care. On April 26, 2017, we convened a Neuropalliative Care Summit with national and international experts in the field to develop a clinical, educational, and research agenda to move the field forward. Clinical priorities included the need to develop and implement effective models to integrate palliative care into neurology and to develop and implement informative quality measures to evaluate and compare palliative approaches. Educational priorities included the need to improve the messaging of palliative care and to create standards for palliative care education for neurologists and neurology education for palliative specialists. Research priorities included the need to improve the evidence base across the entire research spectrum from early-stage interventional research to implementation science. Highest priority areas include focusing on outcomes important to patients and families, developing serious conversation triggers, and developing novel approaches to patient and family engagement, including improvements to decision quality. As we continue to make remarkable advances in the prevention, diagnosis, and treatment of neurologic illness, neurologists will face an increasing need to guide and support patients and families through complex choices involving immense uncertainty and intensely important outcomes of mind and body. This article outlines opportunities to improve the quality of care for all patients with neurologic illness and their families through a broad range of clinical, educational, and investigative efforts that include complex symptom management, communication skills, and models of care.

Frequency and Predictors of Acute Hospitalization Before Death in Patients With Glioblastoma.

CONTEXT: Glioblastoma (GBM) is a devastating and incurable neuro-oncologic disease, and issues related to the end of life are almost invariably a matter of "when," not a matter of "if." Optimizing symptom management and quality of life in later stages of disease is of the utmost priority. OBJECTIVES: To examine the frequency of and factors associated with late acute hospital admission before death in patients with GBM. METHODS: Case-control study comparing patients with GBM admitted to the hospital within one month of death to those without late hospital admission. RESULTS: Of 385 GBM patients followed to death at Memorial Sloan Kettering Cancer Center, 164 (42.6%) were admitted within a month of death, most frequently (140, or 85%) to manage neurologic decline. Of these, 56 (34%) had intensive care unit care during this admission and 22 (13%), 18 (11%), and 2 (1%) received mechanical ventilation, enteral feeding tubes, or cardiopulmonary resuscitation, respectively. In multivariable analysis, in-hospital chaplaincy consultation, and participation in a therapeutic clinical trial, both at any time in the GBM disease course, were significantly associated with late hospital admission. CONCLUSIONS: Late hospitalization is frequent in GBM and often involves intensive care unit care in the management of clinical events that are part of the GBM dying process. Patients with a tendency to use religious support and those enrolled in clinical trials may be at greater risk for late hospitalization. Dedicated prospective study is needed to determine predictors of late hospitalization and to examine the impact of late acute medical care on quality of life in GBM.

Essential competencies in palliative medicine for neuro-oncologists.

Palliative care is an approach to practicing medicine that addresses symptom management, alleviation of pain, assessment of psychosocial and spiritual distress or suffering, and practical support for patients and their caregivers with a goal of improving quality of life for patients with serious and life-threatening illnesses. Although palliative care has gained acceptance as an important part of comprehensive cancer care at the end of life, early integration of palliative care is less common. Patients with high-grade malignant gliomas have an invariably poor prognosis and high morbidity. With short survival times and complex neurological and systemic symptoms, these patients require palliative care from the time of diagnosis. In this review, we highlight the palliative care needs of neuro-oncology patients at diagnosis, during treatment, and at the end of life. We identify some of the barriers to incorporation of palliative care in standard neuro-oncology practice and equate competency in neuro-oncology with competency in the basic tenets of palliative medicine.

Bevacizumab for acute neurologic deterioration in patients with glioblastoma.

AIM: Glioblastoma causes neurologic dysfunction owing to the tumor's location and peritumoral edema. Bevacizumab improves symptoms and steroid dependence, and may rescue glioblastoma patients hospitalized for acute neurologic dysfunction, allowing them to return home for outpatient treatment. MATERIALS & METHODS: We carried out a retrospective review of glioblastoma patients with severe neurologic dysfunction who received bevacizumab as inpatients. RESULTS: Nine patients (median age: 51 years; median Karnofsky Performance Status [KPS]: 40%) received one dose of bevacizumab while admitted for neurologic deterioration. Seven patients were treated at recurrence, two at diagnosis. Six patients clinically improved and continued outpatient treatment, while five decreased/discontinued dexamethasone. CONCLUSION: Single bevacizumab treatment administered to naive hospitalized patients with glioblastoma improves function and quality of life through avoidance of prolonged hospitalization and rehabilitation admissions, and decreased dexamethasone administration.

Identifying the palliative care needs of patients living with cerebral tumors and metastases: a retrospective analysis.

Primary tumors and metastatic involvement of the central nervous system (CNS) lead to a multitude of symptoms and care needs. Patients and caregivers struggle with physical and psychological impairments, a shortened life expectancy and diverse palliative care needs. This study assesses the symptom burden and palliative care needs of patients with primary brain tumors and with metastatic brain tumors requiring inpatient hospital care. It is a retrospective analysis of patients with primary CNS tumors or cerebral metastases over a 6 month period. The data analysed included physical symptom burden and end of life care decisions such as health care proxy, transition to hospice and do-not-resuscitate orders. Hundred and sixty eight patients were included. The most common symptoms were gait impairment (65.5 %), cognitive/personality change (61.9 %), motor deficits (58.3 %), seizures (57.1 %) and delirium (27.4 %). Of the patients that died, 79 % had an appointed health care proxy, 79 % had hospice discussions, 70 % had a do-not-resuscitate order and 24 % received cancer directed therapy in the last month of life. There is a role for more aggressive palliative care support in patients living with primary or metastatic brain tumors.

Promoting excellence in end-of-life care in ALS.

The type and quality of end-of-life care varies greatly in ALS; the time to initiate end-of-life care is not defined, and decision making is hampered by logistical and financial barriers. There has been no systematic review of these issues in ALS. The goals of this initiative are to: 1) improve end-of-life care for patients with ALS and families based on what limited evidence is available; 2) increase awareness, interest, and debate on the end-of-life care in ALS; and 3) identify areas needed for new prospective clinical research. The ALS Peer Workgroup reviewed the literature and 1) identified the current state of knowledge, 2) analysed the gaps in care, and 3) provided recommendations for standard of care and future research. It was shown that areas of investigation are needed on the incorporation of an interdisciplinary approach to care in ALS that includes: psychosocial evaluation and spiritual care; the use of validated instruments to assess patient and caregiver quality of life; and the establishment of proactive caregiver programs. Several public policy changes that will improve coverage for medical care, hospice, and caregiver costs are also reviewed. More clinical evidence is needed on how to provide optimal end-of-life care specifically in ALS.

Vibration anesthesia: a noninvasive method of reducing discomfort prior to dermatologic procedures.

In some dermatologic and cosmetic procedures, local anesthesia is not sufficient for relieving pain; often patients are averse to injections. We propose vibration anesthesia, the use of vibration delivered with commercially available inexpensive massagers to reduce discomfort. We find the analgesic effect of vibration helpful in minimizing pain in patients undergoing injections of botulinum toxin type A treatment for hyperhidrosis, injection of filler substances such as Restylane and Juvederm, laser therapy for leg veins, nail-fold injections, Q-switched laser treatment of tattoos, incision and drainage of abscesses, and cautery of facial warts, as well as facilitating anesthetic injections for needle-phobic patients. We expect that additional uses will be found as experience with this modality grows. Although the use of vibration anesthesia generally does not eliminate pain completely, it can serve to make the injection or procedure much more tolerable.

Reflective practice and palliative care education: a clerkship responds to the informal and hidden curricula.

The authors discuss the damaging influence of informal and hidden curricula on medical students and describe a two-week clerkship in palliative care and clinical ethics at their school (Weill Medical College of Cornell University). This required clerkship, begun in 1999, uses reflective practice and a special pedagogic technique, participant observation, to counteract the influences of the informal and hidden curricula. This technique seeks to immerse the participant observer in the context of care. In their role as participant observers, students are relieved of any direct clinical responsibilities for two weeks so they have time for the careful observation and reflection required and also can consider the humanistic dimensions of practice, which are often displaced by the need to master diagnostic and therapeutic skills. Course objectives include identifying psychosocial and contextual factors that influence care, principles of pain and symptom management, and ethical and legal issues at the end of life. Students are expected to learn how to apply ethical norms to patient care, describe methods of pain and symptom management, communicate in an effective and humanistic manner, and articulate models of patient-centered advocacy. The clerkship fosters professionalism in patient care, appreciation of cultural diversity, and the student's ability to assume responsibility for developing competency in these areas. Although it is too early to know whether this clerkship will ultimately affect the practice patterns of students who experience it, short-term evaluation has been very favorable.