Withdrawal of invasive ventilation in a patient with motor neurone disease and total locked-in syndrome.

Withdrawing invasive ventilation from a person with motor neurone disease who lacks the relevant mental capacity raises ethical issues such as the withdrawal of life-sustaining treatment and establishing best interests. There is little available information on providing optimal symptom management to these patients during the withdrawal process. We describe a man with motor neurone disease who also had total locked-in syndrome at the time of ventilation withdrawal, and we document the legal, ethical, emotional and symptom control issues encountered in supporting him.

Methicillin-resistant Staphylococcus aureus: Prevalence, incidence, risk factors, and effects on survival of patients in a specialist palliative care unit: A prospective observational study.

BACKGROUND: Little is known about the impact of methicillin-resistant Staphylococcus aureus in palliative care settings. To date, the clinical impact of methicillin-resistant Staphylococcus aureus in palliative care is unknown. AIM: To determine prevalence and incidence of methicillin-resistant Staphylococcus aureus colonisation in a specialist palliative care setting, to identify risk factors for methicillin-resistant Staphylococcus aureus colonisation, to determine the eradication success rate and to determine the impact of methicillin-resistant Staphylococcus aureus on survival. DESIGN: Prospective cohort study. SETTING/PARTICIPANTS: Data were collected for consecutive admissions to an inpatient palliative care service. Patients were screened for methicillin-resistant Staphylococcus aureus colonisation on admission and 1 week post admission. Methicillin-resistant Staphylococcus aureus eradication was attempted in methicillin-resistant Staphylococcus aureus positive patients. RESULTS: Data were collected from 609 admissions for 466 individual patients. Admission screening data were available in 95.5%. Prevalence of methicillin-resistant Staphylococcus aureus colonisation was 11.59% (54 patients). One week incidence of methicillin-resistant Staphylococcus aureus colonisation was 1.2%. Risk factors for methicillin-resistant Staphylococcus aureus colonisation were determined using Chi-Squared test and included high Waterlow score (p < 0.01), high palliative performance scale score (p < 0.01), methicillin-resistant Staphylococcus aureus status prior to admission (p < 0.01), admission from hospital (p < 0.05), presence of urinary catheter or percutaneous endoscopic gastrostomy tube (p < 0.05) and poor dietary intake (p < 0.05). Regression analysis did not identify independent risk factors. Methicillin-resistant Staphylococcus aureus was eradicated in 8.1% of admissions, while 46 patients commenced on the protocol (62.2%) died before completing it. Methicillin-resistant Staphylococcus aureus did not significantly impact survival but was significantly associated with having infection episodes and longer length of stay. CONCLUSION: This study identified risk factors for methicillin-resistant Staphylococcus aureus colonisation in palliative care patients. Methicillin-resistant Staphylococcus aureus was eradicated in 8.1% of patients. Hence, restricting methicillin-resistant Staphylococcus aureus screening to high-risk palliative care patients may be prudent.

The impact of meticillin-resistant Staphylococcus aureus on patients with advanced cancer and their family members: A qualitative study.

BACKGROUND: Little is known about the impact of meticillin-resistant Staphylococcus aureus on patients with advanced cancer, such as its impact on the quality of life of this vulnerable group. To date, research on meticillin-resistant Staphylococcus aureus in the palliative care setting has had a quantitative focus. AIM: The purpose of this study was to explore the impact of a meticillin-resistant Staphylococcus aureus diagnosis on patients and their carers. DESIGN: This article reports upon a qualitative interview study of nine patients with advanced cancer and meticillin-resistant Staphylococcus aureus and nine family members (n = 18). Framework analysis was used to analyse the data. SETTING/PARTICIPANTS: Patients and family members of patients with advanced cancer either admitted to the specialist palliative care unit or receiving palliative care in the hospital setting, who had a laboratory confirmed diagnosis of meticillin-resistant Staphylococcus aureus colonisation, were considered for inclusion in the study. RESULTS: Four themes were identified using framework analysis: reactions to receiving a meticillin-resistant Staphylococcus aureus diagnosis, the need for effective communication of the meticillin-resistant Staphylococcus aureus diagnosis, the enigmatic nature of meticillin-resistant Staphylococcus aureus, and lessons to guide the future care of meticillin-resistant Staphylococcus aureus patients. CONCLUSION: This article indicates that meticillin-resistant Staphylococcus aureus can have a significant impact on advanced cancer patients and their families. This impact may be underestimated, but early and careful face-to-face explanation about meticillin-resistant Staphylococcus aureus and its implications can help patients and their families to cope better with it. These findings should be considered when developing policy relating to meticillin-resistant Staphylococcus aureus management and infection control in specialist palliative care settings.

End-of-life prognostic indicators in patients with COPD: Part 1.

In the UK, chronic respiratory diseases cause 13% of adult disability. The major chronic respiratory disease is chronic obstructive pulmonary disease (COPD), a condition involving chronic airway inflammation that causes airflow obstruction and destruction of lung tissue. This leads to a progressive loss of respiratory membrane, which accounts for the clinical manifestation of COPD, which is difficulty maintaining sufficient gas exchange to meet metabolic demands. The primary cause is smoking, with the vast majority of COPD patients having a past or present history of smoking. However exposure to industrial pollutants is also a contributing factor, as is a rare genetic predisposition to developing COPD.

End-of-life prognostic indicators in patients with COPD: part 2.

In the UK, chronic respiratory diseases cause 13% of adult disability. The major chronic respiratory disease is chronic obstructive pulmonary disease (COPD), a condition involving chronic airway inflammation that causes airflow obstruction and destruction of lung tissue. This leads to a progressive loss of respiratory membrane, which accounts for the clinical manifestation of COPD, which is difficulty maintaining sufficient gas exchange to meet metabolic demands. The primary cause is smoking, with the vast majority of COPD patients having a past or present history of smoking. However, exposure to industrial pollutants is also a contributing factor, as is a rare genetic predisposition to developing COPD.

Advance care planning for home health staff: a systematic review.

BACKGROUND: Advance care planning (ACP) is a process where patients express their wishes regarding their future healthcare. Its importance has been increasingly recognised in the past decade. As increasing numbers of elderly people are living in care homes, the aim of this review was to identify the most effective ACP interventions to train/educate all levels of healthcare professionals working in care homes. DESIGN: A systematic review. Two independent reviewers undertook screening, data extraction and quality assessment. DATA SOURCES:  Searched from inception to June 2018: Ovid Medline, Ovid Medline in process, Ovid Embase, Cochrane Central Register of Controlled Trials, EBSCO Cinahl and Ovid PsycINFO. RESULTS: Six studies were included: three before and after studies, one cluster randomised controlled trial (RCT), one non-blinded RCT and one qualitative study. Five studies reported on ACP documentation, three on impact on ACP practice and three studies on healthcare-related outcomes. All quantitative studies reported an improvement in outcomes. In the three studies reporting on health-related outcomes, one showed significant reductions in hospitalisation rate, days and healthcare costs; one reported significant reductions in hospital deaths; and the third showed reductions in hospital days and deaths. A meta-analysis could not be performed due to the heterogeneity of the outcome measures. The included qualitative study highlighted perceived challenges to implementing an educational programme in the care home setting. CONCLUSION: There is limited evidence for the effectiveness of ACP training for care home workers. More well-designed studies are needed. TRIAL REGISTRATION NUMBER: CRD42016042385 .

Assisted ventilation in motor neurone disease during inpatient palliative care: barriers and utilisation.

OBJECTIVES: An increasing number of patients with motor neuron disease (MND) in the UK and Ireland use assisted ventilation, and a small proportion of these use long-term tracheostomy ventilation (TV).1 2 NICE guidelines recommend that patients with MND should routinely receive specialist palliative care input.3 The aim was to establish the extent to which hospices and specialist palliative care units (SPCUs) in the UK and Ireland currently manage patients with MND using assisted ventilation especially TV and to identify any associated barriers. METHODS: A 25-item questionnaire was developed in Survey Monkey. A link to the questionnaire was emailed to every medical director (n=185) of inpatient hospices/SPCUs in the UK and Ireland. RESULTS: The response rate was 42.4% (n=78). 97.4% of units admit patients with MND on non-invasive ventilation (NIV), but only 28.2% admit those using TV. 80.8% of units have adequate expertise in the management of NIV, compared with 7.7% for managing TV. 35.9% and 2.6% of units have a policy for managing patients using NIV and TV, respectively. 14.1% respondents had been involved in the care of patients with MND using TV, in the specialist palliative care setting in the last 5 years. CONCLUSIONS: A minority of UK and Irish hospices/SPUs provide support to TV MND patients and few units currently have management or admission policies for this cohort of patients. Respondents indicated a lack of appropriate expertise and experience. Further exploration of these barriers is required to establish how to optimise care for TV MND patients in this setting.

Delivering an advance care planning facilitated model.

BACKGROUND: Advance care planning is increasingly recognised as an integral part of achieving excellence at the end of life (EoL), but barriers still prevent individuals from having the opportunity to discuss their wishes and preferences for the future. AIM: To describe the development and initial evaluations of an innovative facilitated ACP model, the ACP Triple E, which empowers individuals through education to engage in ACP conversations. METHODS: This model uses a collaborative approach involving all sectors of a large university health board to equip all health and social care professionals with the knowledge, skills and confidence to engage in ACP discussion and also raise public awareness of the benefits of ACP. CONCLUSION: This model includes recognised elements that support successful implementation of ACP. Initial evaluations of the model are extremely positive. Further analysis of the data is now needed to evaluate the model's flexibility and its ability to change practice and achieve strategic objectives.

Sexual well-being in cancer and palliative care: an assessment of healthcare professionals' current practice and training needs.

: Sexual well-being is often significantly affected by cancer and its treatments. Previous research shows that a patient's sexual well-being is often overlooked in clinical practice. OBJECTIVES: The aims of this study were twofold. First, to determine the current practice of healthcare professionals (HCPs) working with cancer and palliative care patients in primary and secondary care settings in relation to sexual well-being. Second, to determine the education requirements of HCPs regarding the management of sexual well-being concerns of cancer/palliative care patients. METHODS: An anonymous electronic questionnaire was sent to assess current practice and education needs relating to the management of sexual well-being in cancer and palliative care. RESULTS: The majority of HCPs did not routinely assess sexual well-being in cancer and palliative care patients, with only 13.8% of secondary care staff, 7.9% of district nurses and 4% of general practitioners (GPs) routinely assessing it. The most frequent reason for non-assessment was that it was not the presenting symptom. The majority of respondents felt further support and training would be of benefit, including knowledge of specialist services patients could be referred to, written information for patients and access to assessment tools. CONCLUSIONS: This survey identified that sexual well-being in cancer and palliative care patients is not routinely assessed with the majority of respondents stating that further support and training would be beneficial. The results of this questionnaire will be used to inform and develop sexual well-being training for HCPs working with cancer and palliative care patients.