Abstract Locked-in syndrome (LIS) is a rare neurologic disorder rendering an individual quadriplegic and anarthric with preserved self-awareness and normal if not near-normal cognition. A lesion to ...the ventral pons causes the classic form of LIS, and patients can typically interact with their environment with eye/eyelid movements. LIS patients may live for years with preserved quality of life (QoL) and cognitive function, but with severe disability. However, medical providers and family often underestimate the patient's QoL, and choose less aggressive care. Prompt assessment of decisionality in LIS patients is challenging, but it must be done to allow these patients to participate in their care. We present the case of a 54-year-old man with LIS. The medical team recommended comfort measures, but the family advocated involving the patient in goals of care discussions. The patient was determined to be decisional during the acute hospitalization, and he elected for life-prolonging care. This case emphasizes the importance of unbiased shared decision making, but also the importance of utilizing a practical framework to assess the decision-making capacity in these patients. We provide a suggested approach to determining decision-making capacity in similar cases or conditions.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
Although previous research on advance care planning (ACP) has associated ACP with improved quality of care at the end of life, the appropriate use of ACP remains limited.
To evaluate the impact of a ...pilot program using the "Honoring Choices Wisconsin" (HCW) model for ACP in a tertiary care setting, and to understand barriers to system-wide implementation.
Retrospective review of prospectively collected data.
Patients who received medical or surgical oncology care at Froedtert and the Medical College of Wisconsin.
Patient demographics, disease characteristics, patient satisfaction, and clinical outcomes.
Data from 69 patients who died following the implementation of the HCW program were reviewed; 24 patients were enrolled in the HCW program while 45 were not. Patients enrolled in HCW were proportionally less likely to be admitted to the ICU (12.5% vs. 17.8%) and were more likely to be "do not resuscitate" (87.5% vs. 80.0%), as well as have a completed ACP (83.3% vs. 79.1%). Furthermore, admission to a hospice was also higher among patients who were enrolled in the HCW program (79.2% vs. 25.6%), with patients enrolled in HCW more likely to die in hospice (70.8% vs. 53.3%). The HCW program was favorably viewed by patients, patient caregivers, and healthcare providers.
Implementation of a facilitator-based ACP care model was associated with fewer ICU admissions, and a higher use of hospice care. System-level changes are required to overcome barriers to ACP that limit patients from receiving end-of-life care in accordance with their preferences.
Lipid‐lowering drugs produce myopathic side effects in up to 7% of treated patients, with severe rhabdomyolysis occurring in as many as 0.5%. Underlying metabolic muscle diseases have not been ...evaluated extensively. In a cross‐sectional study of 136 patients with drug‐induced myopathies, we report a higher prevalence of underlying metabolic muscle diseases than expected in the general population. Control groups included 116 patients on therapy with no myopathic symptoms, 100 asymptomatic individuals from the general population never exposed to statins, and 106 patients with non–statin‐induced myopathies. Of 110 patients who underwent mutation testing, 10% were heterozygous or homozygous for mutations causing three metabolic myopathies, compared to 3% testing positive among asymptomatic patients on therapy (P = 0.04). The actual number of mutant alleles found in the test group patients was increased fourfold over the control group (P < 0.0001) due to an increased presence of mutation homozygotes. The number of carriers for carnitine palmitoyltransferase II deficiency and for McArdle disease was increased 13‐ and 20‐fold, respectively, over expected general population frequencies. Homozygotes for myoadenylate deaminase deficiency were increased 3.25‐fold with no increase in carrier status. In 52% of muscle biopsies from patients, significant biochemical abnormalities were found in mitochondrial or fatty acid metabolism, with 31% having multiple defects. Variable persistent symptoms occurred in 68% of patients despite cessation of therapy. The effect of statins on energy metabolism combined with a genetic susceptibility to triggering of muscle symptoms may account for myopathic outcomes in certain high‐risk groups. Muscle Nerve, 2006
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BFBNIB, FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SAZU, SBCE, SBMB, UL, UM, UPUK
Background
Despite previous literature affirming the importance of palliative care training in surgery, there is scarce literature about the readiness of Surgical Oncology and ...hepatopancreaticobiliary (HPB) fellows to provide such care. We performed the first nationally representative study of surgical fellowship program directors’ assessment of palliative care education. The aim was to capture attitudes about the perception of palliative care and disparity between technical/clinical education and palliative care training.
Methods
A survey originally used to assess surgical oncology and HPB surgery fellows’ training in palliative care, was modified and sent to Program Directors of respective fellowships. The final survey consisted of 22 items and was completed online.
Results
Surveys were completed by 28 fellowship programs (70 % response rate). Only 60 % offered any formal teaching in pain management, delivering bad news or discussion about prognosis. Fifty-eight percent offered formal training in basic communication skills and 43 % training in conducting family conferences. Resources were available, with 100 % of the programs having a palliative care consultation service, 42 % having a faculty member with recognized clinical interest/expertise in palliative care, and 35 % having a faculty member board-certified in Hospice and Palliative Medicine.
Conclusions
Our data shows HPB and surgical oncology fellowship programs are providing insufficient education and assessment in palliative care. This is not due to a shortage of faculty, palliative care resources, or teaching opportunities. Greater focus one valuation and development of strategies for teaching palliative care in surgical fellowships are needed.
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EMUNI, FIS, FZAB, GEOZS, GIS, IJS, IMTLJ, KILJ, KISLJ, MFDPS, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, SBMB, SBNM, UKNU, UL, UM, UPUK, VKSCE, ZAGLJ
Abstract Background Peritoneal carcinomatosis represents widespread metastatic disease throughout the abdomen and/or pelvis. Cytoreductive surgery/hyperthermic intraperitoneal chemotherapy ...(CRS/HIPEC) improves the overall survival compared to standard therapy alone. The role palliative care (PC) plays however, remains poorly studied among these patients. Methods Patients who had previously undergone HIPEC and who underwent an inpatient admission from 7/1/2013 to 6/30/2014 were identified to determine which patients were referred for inpatient or outpatient palliative consultation. Multivariable logistic regression analysis was performed to identify risk factors associated with the use of PC. Results Of the 60 patients analyzed, 23 (38.3%) had a PC consultation with a median time to PC referral of 310 d (IQR: 151-484). Patients who were prescribed opioids (no PC referral versus PC referral: 46.0% versus 91.3%, P < 0.001), patients who reported the use of a cancer-related emetic (35.1% versus 87.0%, P < 0.001), patients reporting the use of TPN (16.2% versus 39.1%, P = 0.046), and patients dependent on a gastric tube for nutrition (5.4% versus 43.5%, P < 0.001) were more likely to be referred to a PC consultation. On multivariable analysis, use of opioids, use of a cancer-related antiemetic, and the use of a G-tube were independently associated with a greater odds for being referred to PC (all P < 0.05). Conclusions Approximately one-third of patients were referred to PC following cytoreductive surgery/hyperthermic intraperitoneal chemotherapy. Palliative care referrals were most commonly used for patients with chronic symptoms, which are difficult to manage especially toward the end of life.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UL, UM, UPCLJ, UPUK, ZRSKP
Outcomes
1. Explain the 3 parts of the assessment for brain death to a family
2. Give examples of faith practices that have religious objections to brain death
3. Assess the beliefs of caregivers in ...regard to their religious view of brain death and use the interdisciplinary team to support patients’ families
In the US and most other countries, death is defined as
1. Irreversible cessation of circulatory and pulmonary functions
2. Irreversible cessation of all functions of the whole brain
Although protocols vary across hospitals, brain death is assessed by doing a physical exam, an apnea test, and possible ancillary tests. Palliative care teams may be consulted to help support the family through these stressful assessments. To help teams provide high-quality care throughout the assessments, a neurologist will review the steps involved in defining death by neurologic criteria and how they support a definition of brain death.
Abrahamic faith traditions (Judaism, Christianity, and Islam) hold varying views on the acceptability of brain death as human death. Some religions reject the idea because of persistent scientific uncertainty. Others object to the definition because of incongruent theological or philosophical underpinnings. Several states and some countries have permitted religious accommodation in death determination if such a determination will “violate personnel religious beliefs of an individual.” A palliative care chaplain will share the diversity of views on brain death as it aligns with the theological definition of death.
It is important for all members of a hospice or palliative care team to understand these varying beliefs and have a skill set that allows thoughtful exploration of a family's spiritual beliefs about a declaration of death. We will conclude with an interactive communication exercise focusing on language that explores families’ questions about brain death and addresses an approach to patients whose faith traditions do not equate neurologic death with dying.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
Status epilepticus is a common and under-recognized cause of unconsciousness among hospitalized patients. It can clinically mimic delirium and other causes of acute mental status change, especially ...when clinically relevant seizure activity is not appreciated on physical examination. While the successful treatment of status epilepticus may require anesthetic dosing of antiepileptics such as barbiturates, these seemingly drastic therapeutic measures are justified when goals of care are life prolonging as they may allow a patient to regain consciousness and meaningfully interact with loved ones. However, medical burden from electroencephalogram (EEG) monitoring and other care associated with its diagnosis and treatment can contribute to distress for patients who may be dying from a comorbid illness. Furthermore, when goals of care transition to comfort, care challenges can result regarding the ongoing management of barbiturates or other sedatives, previously prescribed to treat the status epilepticus. In this case study, the lack of clinically significant seizure activity led us to conclude that the discontinuation of a barbiturate infusion and the EEG monitoring was the clinically appropriate approach for a dying patient with comfort goals of care and nonconvulsive status epilepticus.
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