Advance Care Planning Among Patients With Amyotrophic Lateral Sclerosis: Patient Perspectives on Goals of Care Conversations.

INTRODUCTION: Little is known regarding circumstances surrounding advanced care planning (ACP) for patients with amyotrophic lateral sclerosis (ALS). We aim to describe preferences, and perspectives surrounding ACP in patients with ALS. METHODS: We conducted a survey of patients with ALS. Survey questions were related to advance directive completion and ACP discussions regarding end-of-life (EoL) choices. RESULTS: 49 surveys were included. Patients have given thought to advance directives, goals of care, and EoL treatments within months of diagnosis (Median: 1 month; IQR: .6 - 3 months). Twenty-seven opened dialogue with spouses, 24 with family members, 19 with health professionals and 16 with their lawyer. Eighty percent were comfortable discussing advance directives and power of attorney while fewer (70%) are less comfortable regarding specific aspects of care such as CPR or invasive ventilation. Only one barrier to discussion was identified with one patient reporting they did not wish to talk about the topic. There was no significant correlation between timing of diagnosis and whether an EoL discussion had occurred (τb = .23, P = .14: n = 42). Level of feeling informed was significantly associated with making EoL decisions for CPR, legal arrangements for a decision maker and completion of living will or AD. CONCLUSION: In this small cohort, a substantial proportion of ALS patients initiated EoL conversations early. When feeling informed, patients were more likely to make specific EoL choices. Findings suggest an opportunity for providers to help facilitate conversations, ensuring patient wishes.

The Impact of a Neurocritical Care and Neuropalliative Collaboration on Intensive Care Unit Outcomes.

BACKGROUND: Neurocritical care (NCC) and neuropalliative care (NPC) clinicians provide care in specialized intensive care units (ICU). There is a paucity of data regarding the impact of NCC and NPC collaboration in smaller, community-focused settings. OBJECTIVE: To determine the clinical impact of introducing a NCC/NPC collaborative model in a mixed ICU community-based teaching hospital. DESIGN: Retrospective pre/post cohort study. SUBJECTS: Patients ≥18 years of age admitted to the ICU who received neurology and palliative care consultations between September 1, 2015 and August 31, 2017 at a 300 bed community-focused hospital were included. INTERVENTION: The addition of a NCC/NPC collaborative model took place in September of 2016. The time periods before (9/1/2015 to 8/31/2016) and after (9/1/2016 to 8/31/2017) the addition were compared. RESULTS: A total of 274 admissions (pre: 130, post: 144) were included. There were significantly more NCC consultations provided in the post-period (44.6% vs 57.6%; P = .03). NPC consultation increased (55.4% vs 66.7%; P = .056) Median LOS was significantly shorter after implementation of the collaborative model (11 vs 8 days; P = .01). Median ICU LOS was also shorter by 1 ICU-day in the post-period, though this was not statistically significant (P = .23). Mortality rates were similar (P = .95). CONCLUSIONS: Our findings suggest NCC/NPC collaboration in a community-focused teaching hospital was associated with more NCC consultations, as well as shorter LOS without increasing mortality. These data highlight the importance of supporting collaborative models of care in community settings. Further research is warranted.

Caregiver perceptions of end-of-life care in patients with high-grade glioma.

BACKGROUND: Patients dying from high-grade gliomas (HGG) suffer from high symptom burden in the end-of-life (EoL) phase. Family caregivers are most informed about the patient's symptoms and disease course. The aim of this study is to assess caregiver perception on quality of EoL care of HGG patients. METHODS: Caregivers prospectively participated in the Toolkit After-Death Bereaved Family Member Interview, part of the Toolkit of Instruments to Measure End-of-Life Care (TIME survey). This validated survey assesses EoL care in areas such as physical comfort and emotional support, advance care planning, focus on the individual, attention to family, and coordination of care. The quality of EoL care was measured by domain scores (0 = care was always optimal, 1 = care was always suboptimal) or with a 0-10 scale. RESULTS: Of the 55 enrolled family caregivers, 44 completed the interview and rated the overall care high (8.90 ± 1.36/10), perceived that patients' wishes were respected (9.46 ± 0.95) and that they died in dignity (9.65 ± 0.98). Caregivers perceived high satisfaction with information and decision-making (0.18), advance care planning (0.19), focus on the individual (0.16), and care coordination (0.11). Attention to family (0.25) needed improvement. Only 41% of caregivers were confident that they knew what to do at the time of death and 46% felt that the healthcare team did not provide them with someone to turn to in distress. CONCLUSIONS: Caregivers reported high overall satisfaction with EoL HGG care, though attention to family and communication needed improvement. Focus should therefore be on improved caregiver communication to improve EoL care, caregiver burnout, and bereavement in HGG populations.

Models of outpatient neuropalliative care for patients with amyotrophic lateral sclerosis.

OBJECTIVE: To describe some current models of outpatient neuropalliative care (NPC) available to patients with amyotrophic lateral sclerosis at different institutions within the United States. METHODS: Six NPC physicians were asked to contribute written descriptions about the PC available in their ALS clinics. Descriptions were then compiled and assessed for similarities and differences. RESULTS: All clinics are multidisciplinary, with regular appointments every 3 months and similar appointment times for new visits (60-120 minutes) and follow-up visits (20-45 minutes). Four clinics have an NPC specialist embedded within the ALS clinic, 1 institution has a separate clinic for NPC, and 1 institution has both. The NPC physician at 5 institutions is a neurologist with formal palliative care training and at 1 institution is an internist with formal palliative care training. NPC is part of routine care for all patients at 2 institutions, and the primary reasons for consultation are goals of care (GOC) and severe symptom management. CONCLUSION: NPC is provided to patients with ALS heterogeneously throughout the United States with some variation in services and delivery, but all clinics are addressing similar core needs. Given the poor prognosis and high PC needs, those with ALS are the ideal patients to receive NPC. Future studies are necessary given the paucity of data available to determine best practices and to better define meaningful outcomes.

Assessing Preoperative Mobility in Total Hip Arthroplasty: A SAFE T database study.

This study examined whether individuals undergoing total hip arthroplasty who are self-rated as "highly active", demonstrated higher pre-operative activity levels than others. METHODS: 483 patients were retrospectively identified; 241 were "highly active" and 242 were not. They were compared using WOMAC, self-reported activity and 6-Minute Walk Test (6MWT). RESULTS: Self-reported highly active adults demonstrated statistically significant higher WOMAC scores (48.85 vs 43.79), increased mean number of activities performed and mean 6MWT (348.14 m vs 274.64 m). CONCLUSIONS: The positive correlation between subjective and objective measures of mobility increase our confidence in the latter as valid indicator of patient's preoperative activity level.

Top Ten Tips Palliative Care Clinicians Should Know About Caring for Patients with Neurologic Illnesses.

Patients with neurologic illnesses are commonly encountered by palliative care (PC) clinicians though many clinicians feel uncomfortable caring for these patients. Understanding how to diagnose, treat, communicate with, and prognosticate for neurology patients will improve the confidence and competence of PC providers in the neurology setting. This article offers PC providers 10 useful tips that neurologists with PC training think all PC providers should know to improve care for patients with neurologic illness.

Thyroid hormone-dependent development in Xenopus laevis: a sensitive screen of thyroid hormone signaling disruption by municipal wastewater treatment plant effluent.

Because thyroid hormones (THs) are conserved modulators of development and physiology, identification of compounds adversely affecting TH signaling is critical to human and wildlife health. Anurans are an established model for studying disruption of TH signaling because metamorphosis is dependent upon the thyroid system. In order to strengthen this model and identify new gene transcript biomarkers for TH disruption, we performed DNA microarray analysis of Xenopus laevis tadpole tail transcriptomes following treatment with triiodothyronine (T(3)). Comparison of these results with previous studies in frogs and mammals identified 36 gene transcripts that were TH-sensitive across clades. We then tested molecular biomarkers for sensitivity to disruption by exposure to wastewater effluent (WWE). X. laevis tadpoles, exposed to WWE from embryo through metamorphosis, exhibited an increased developmental rate compared to controls. Cultured tadpole tails showed dramatic increases in levels of four TH-sensitive gene transcripts (thyroid hormone receptor ß (TRß), deiodinase type II (DIO2), and corticotropin releasing hormone binding protein (CRHBP), fibroblast activation protein α (FAPα)) when exposed to T(3) and WWE extracts. TRß, DIO2, and CRHBP were identified as TH sensitive in other studies, while FAPα mRNA transcripts were highly TH sensitive in our array. The results validate the array and demonstrate TH-disrupting activity by WWE. Our findings demonstrate the usefulness of cross-clade analysis for identification of gene transcripts that provide sensitivity to endocrine disruption. Further, the results suggest that development is disrupted by exposure to complex mixes of compounds found in WWE possibly through interference with TH signaling.

NIPPV: prevalence, approach and barriers to use at Canadian ALS centres.

OBJECTIVE: The purpose of this study was to evaluate Canadian amyotrophic lateral sclerosis (ALS) centres with respect to: 1) the prevalence of Non-invasive positive pressure ventilation (NIPPV) and invasive mechanical ventilation via tracheostomy (TV) utilization, 2) the approach to NIPPV use, focusing upon the currently employed initiation criteria and 3) the barriers influencing NIPPV administration. METHODS: A descriptive survey research design aimed to obtain quantitative data and open-ended responses from an active physician at each of the 15 multidisciplinary Canadian ALS centres. RESULTS: The principal findings of this study were: 1) NIPPV and TV are used in 18.3% and 1.5% of patients at Canadian ALS centres, respectively, 2) symptoms of respiratory insufficiency, namely orthopnea (clinical significance rated at 9.00/10 +/- 1.48), dyspnea (8.27 +/- 1.95) and morning headache (7.55 +/- 1.21) are the most significant indicators for NIPPV initiation, 3) the primary barriers to NIPPV utilization are patient intolerance (70% of centres) and inaccessibility of respirologists and ventilation technologists (50% of centres). CONCLUSIONS: Variability in NIPPV use has an impact upon the management of Canadian ALS patients. The establishment of more definitive NIPPV initiation criteria, emphasizing respiratory symptoms, and the attenuation of barriers to NIPPV use should be targeted so as to ensure optimal care for all ALS patients.