Primary Palliative Care in Huntington's Disease.

Background: Palliative care practices, including communication about patient-centered goals of care and advance care planning (ACP), have the potential to enhance care throughout the course of Huntington's disease (HD) and related disorders. The goal of our project was to develop a pilot program that integrates primary palliative care practices with interdisciplinary care for HD. Objectives: (1) To train HD team members to facilitate goals of care and ACP conversations at all stages of HD; (2) To create materials for care planning in HD focused on patient-centered goals of care and health-related quality of life; and (3) To modify clinic workflow to include goals of care and ACP discussions. Methods: We defined planning domains to expand care planning beyond end-of-life concerns. We created a patient and family guide to advance care planning in HD. We conducted VitalTalk communications training with the HD team. We modified the interdisciplinary clinic workflow to include ACP and developed an EMR template for documentation. Results: After communication training, more team members felt well prepared to discuss serious news (12.5% to 50%) and manage difficult conversations (25% to 62.5%). The proportion of clinic visits including advance care planning discussions increased from 12.5% to 30.6% during the pilot phase. Conclusions: Provision of primary palliative care for HD in an interdisciplinary clinic is feasible. Integration of palliative care practices into HD specialty care requires additional training and modification of clinic operations.

End-of-life and hospice care for neurologic illness.

Systems for end of life care around the world vary in availability, structure, and funding. When available, most end of life care is in the hospice model with an interdisciplinary team approach to care of people who are expected to die within months and whose primary goal is to maximize quality of life. Symptom management near the end of life is guided by prognosis and individual priorities. People dying with neurologic disease are likely to have impaired communication or mobility that adds to the complexity of prognostication and symptom management. Neurologic specialists have important roles to play in end of life care due to their unique understanding of disease prognosis as well as end of life symptom burden and management. Neurologic specialists need to become strong advocates for the importance of end of life care by being actively involved in the hospice movement and by addressing current disparities in access to care.

Top Ten Tips Palliative Care Clinicians Should Know About Seizures at the End of Life.

Seizures are physically burdensome and emotionally distressing for patients, families, caregivers, and clinicians. Patients with neurological diseases are at increased risk of having complex, difficult-to-control seizures at the end of life. Palliative care (PC) clinicians asked to provide management of these seizures may not be familiar or comfortable with more complex seizures or epilepsy. A team of neurologists and PC specialists have compiled a list of tips to guide clinicians on how to care for patients having seizures and to support their families/caregivers.

Reducing medication errors: a regional approach for hospitals.

Since the Institute of Medicine's report, To Err Is Human, and the subsequent publication, Crossing the Quality Chasm, the subject of reducing medical errors has gained considerable attention from patients, healthcare providers, employers and government organisations in the US. Most nonoperative errors are related to medications. Medication errors lead not only to negative repercussions subjectively experienced by both the patient and the healthcare staff, but also to additional expenditures due to complications. Education, adapting new safety systems and technology, and having clinical pharmacists play a larger role in the medication process can all help in solving the problem of medication errors. Designing and executing a rational system to reduce medication errors is particularly germane in the current era of increased demands for quality healthcare in the setting of cost-containment pressures. In the Delaware Valley (Philadelphia and surrounding area) of Pennsylvania, USA, a consortium of healthcare providers in cooperation with the Health Care Improvement Foundation (HCIF), and two non-profit oganisations--the ECRI (formerly the Emergency Care Research Institute) and the Institute for Safe Medication Practices (ISMP)--have combined to establish and promote safe medication practices under a programme known as the Regional Medication Safety Program for Hospitals. At the core of the programme are 16 medication safety goals, which centre on establishing an institutional culture of safety, modifying infrastructure and clinical practice to reflect this culture, and using technology to facilitate these changes. It is believed that this rational campaign to improve patient safety may serve as a paradigm for other regions around the world.

Integrating palliative care into the outpatient, private practice oncology setting.

CONTEXT: Quality care for patients with cancer is a national priority-for those with noncurable cancer, the stakes are even higher. Strategies to promote integration of palliative care into oncology practice may enhance quality. We have developed a model in which palliative care services are integrated into the private, office-based oncology practice setting. We have evaluated the feasibility and assessed outcomes for both the oncologists and the patients they serve. To our knowledge, an embedded clinic in an outpatient, private practice oncology clinic has not been described previously. OBJECTIVE: The primary outcomes assessed were 1) quality care outcomes through assessment of symptom burden and relief achieved through palliative care consultation, 2) provider satisfaction, 3) volume determined by number of palliative care consultations over time, and 4) time saved for the oncologist as a surrogate for the bottom line of the cancer practice. METHODS: Measurement of: symptom burden and relief with the Edmonton Symptom Assessment System (ESAS), physician acceptance of palliative care services through a provider satisfaction survey and volume of referrals, and billing data to determine potential oncologists' time saved. RESULTS: Palliative care consultation was associated with a reduction in symptom burden by 21%, evidenced by decrease in average total ESAS score from 49.3 to 39. Median provider satisfaction scores rating components of palliative care ranged from 8.5 to 9/10, with an overall provider satisfaction of 9/10. Over the study period, the "embedded" oncology group consultation requests increased 87% (67-120), with each individual oncology provider nearly doubled. The total time saved for the oncology practice in Year 2 was just over four weeks (9720 minutes; 162 hours). CONCLUSION: An embedded palliative care clinic integrated into an office-based oncology practice is feasible and may improve the quality of care. Formal study of this service delivery model is warranted.

Supportive management of patients with brain tumors.

Management issues for patients with brain tumors include peritumoral edema, symptomatic seizures, venous thromboembolism, headache, pain, fatigue and neuropsychological complaints. Vasogenic edema is typically ameliorated with the lowest dose possible of corticosteroid. Seizures are managed with attention to additional or complicated side effects of antiepileptic drugs and their interactions with chemotherapy, and primary prevention with antiepileptic medications is not recommended. Appropriate treatments for headache, pain, fatigue and neuropsychological complaints are important, but are not yet well standardized. Above all, patients' personal goals regarding their priorities at the end of life have the most importance.