Dealing With Death Taboo: Discussion of Do-Not-Resuscitate Directives With Chinese Patients With Noncancer Life-Limiting Illnesses.

BACKGROUND: Noncancer patients with life-limiting diseases often receive more intensive level of care in their final days of life, with more cardiopulmonary resuscitation performed and less do-not-resuscitate (DNR) orders in place. Nevertheless, death is still often a taboo across Chinese culture, and ethnic disparities could negatively affect DNR directives completion rates. OBJECTIVES: We aim to explore whether Chinese noncancer patients are willing to sign their own DNR directives in a palliative specialist clinic, under a multidisciplinary team approach. DESIGN: Retrospective chart review of all noncancer patients with life-limiting diseases referred to palliative specialist clinic at a tertiary hospital in Hong Kong over a 4-year period. RESULTS: Over the study period, a total of 566 noncancer patients were seen, 119 of them completed their own DNR directives. Patients had a mean age of 74.9. Top 3 diagnoses were chronic renal failure (37%), congestive heart failure (16%), and motor neuron disease (11%). Forty-two percent of patients signed their DNR directives at first clinic attendance. Most Chinese patients (76.5%) invited family caregivers at DNR decision-making, especially for female gender (84.4% vs 69.1%; P = .047) and older (age >75) age group (86.2% vs 66.7%; P = .012). Of the 40 deceased patients, median time from signed directives to death was 5 months. Vast majority (95%) had their DNR directives being honored. CONCLUSION: Health-care workers should be sensitive toward the cultural influence during advance care planning. Role of family for ethnic Chinese remains crucial and professionals should respect this family oriented decision-making.

Within and between day repeatability of the incremental shuttle walking test in patients with thoracic cancer.

BACKGROUND: Breathlessness is common in patients with thoracic cancer but difficult to manage. The Incremental Shuttle Walking Test (ISWT) can help assess new treatments, but its repeatability has not been described in this group. AIM: To examine within and between day repeatability of the ISWT in this setting. METHODS: Patients with incurable thoracic cancer were recruited from outpatient clinics at a University Hospital. Two ISWTs were completed one hour apart on two consecutive days, with the first test for familiarization purposes only. Repeatability of distance walked was examined using Bland and Altman plots and assessed as the single determination (within subject) standard deviation of the difference between tests and its 95% range. RESULTS: Forty-one patients participated and completed all tests. Mean (SD) distance walked was 333 (134), 349 (129) and 353 (130) m over the three tests, with the mean difference significantly different from zero between days (16 m, 95% CI 8-24 m, P = 0.043) but not within days (5 m, 95% CI -2 to 12 m, P = 0.47). Within and between day single determination SD and 95% ranges were 30 (-31 to 91) m and 36 (-37 to 109) m respectively. CONCLUSIONS: These data help inform the design of studies making use of the ISWT and the interpretation of their findings.

Supportive & palliative interventions in motor neurone disease: what we know from current literature?

Although there is no cure for motor neurone disease (MND), the advent of supportive interventions including multidisciplinary care (MDC) has improved treatment interventions and enhanced quality of life (QOL) for MND patients and their carers. Our integrative review showed evidence-based MDC, respiratory management and disease-modifying therapy that have improved the outcomes of patients diagnosed with MND. Supportive approaches to nutritional maintenance and optimization of symptomatic treatments, including management of communication and neuropsychiatric issues, improve the QOL for MND patients. Notwithstanding improvement to care and QOL, survival benefit has become evident with the advent of a MDC framework, early treatment with non-invasive ventilation (NIV). In addition, weight maintenance remains critical, as weight loss is associated with more rapid disease progression. The endof- life phase is poorly defined in MND patients and treatment remains challenging, yet effective symptom control through palliative care (PC) is achievable and essential.

End-of-life Characteristics and Palliative Care Provision for Patients With Motor Neuron Disease.

Motor neuron disease (MND) is a neurodegenerative disease and manifested as progressive decline in physical, respiratory, swallowing and communication function, and ultimately death. Traditional model of care was fragmented and did not match with multifacet needs of patients and carers. Furthermore, there could be lack of integrated care at end of life for patients with MND in most lower- and middle-income countries or in places with inadequate palliative care (PC) coverage. In view of this, a special workgroup for patients with MND, which includes neurologist, respiratory physician, rehabilitation specialist, and PC physician was formed in Hong Kong since year 2011. In various disease phase, each specialty team plays a leading role in coordinated care of patients with MND. From July 2011 to June 2017, a total of 52 patients with MND were referred for PC; 41 deceased patients with MND were included into data analysis. Major cause of death remains pneumonia (54.8%) and respiratory failure (40.5%). Most of the patients with MND (66.7%) died in acute ward and neurology units, with only 11.9% dying in PC units and hospices. The PC team plays a major role in advance care planning (ACP), and most patients had their ACP documented at second or third PC clinic visit (93.8%). Patients with MND often have limitations in mobility, swallowing difficulty, respiratory insufficiency requiring ventilator support, and various psychosocial needs. This highlighted the importance of early PC referral.

"It's not all doom and gloom": perceptions of medical students talking to hospice patients.

BACKGROUND: End-of-life care has become a priority in medical education internationally. A previous study of hospice patients and staff regarding medical students teaching in a hospice showed positive responses from patients and hospice staff. However concern was expressed by some staff regarding medical students' welfare, contributing to gatekeeping by professionals. Studies have shown that medical students feel underprepared to care for the dying by the time they qualify. OBJECTIVE: The study's objective was to explore in more detail the views and experience of medical students who had spoken with patients during their hospice placement. DESIGN: This was a qualitative study. SETTING/SUBJECTS: The study was carried out with 14 Hull York Medical School (HYMS) students who had responded in an electronic survey that they had spoken with patients during their hospice placement. MEASUREMENT: Semistructured interviews provided the study's data. RESULTS: Although students expressed some anxieties prior to their hospice visit about meeting patients who were near the end of life, they felt that the overall experience, and the time spent with patients in particular, provided valuable learning about palliative care and preparation for caring for dying patients. CONCLUSIONS: We would encourage staff to not be overprotective but to support students to take every opportunity to meet with patients in a hospice.

Primary thromboprophylaxis for hospice inpatients: who needs it?

Primary thromboprophylaxis (PTP) is a Department of Health priority in England. The NICE guidelines agree that PTP is inappropriate in the dying patient, but should be considered for those with reversible pathology. In the light of continued variation and uncertainty in UK hospice practice, we assessed PTP prescribing in three hospices. Case notes were reviewed from consecutive patients admitted before (300 patients) and after (350 patients) implementation of the Pan Birmingham Cancer Network (PBCN) venous thromboembolism prophylaxis (VTE) prevention guidelines. Just under half (43%; 40%) of patients had a contraindication to anticoagulation and PTP. Whilst just under a tenth (8.6%; 8.7%) in each group had a temporary increased risk of VTE, considerably fewer (3.6%; 6.3%) had a temporary increased risk of VTE without contraindication to PTP. Patients receiving PTP increased slightly from 1% to 3.6% and documentation of PTP decisions increased from 5% to 81%. Whilst the PBCN VTE tool is a useful tool to tailor an approach for this complex patient group, many questions remain. Clinical trials that include patients with advanced disease with relevant outcome measures are needed to help inform the clinicians who care for them.