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Concept: Palliative medicine

173

The presence of acute or chronic respiratory failure is often seen as a terminal phase of chronic obstructive pulmonary disease. A great variability in end-of-life practice is observed in these patients mainly because physicians are not always able to correctly predict survival. There is a need for a clear discussion about decision making earlier than when acute respiratory failure ensues. Indeed, a perceived poor quality of life does not necessarily correlate with a clear willingness to refuse invasive or noninvasive mechanical ventilation. It has been suggested to start palliative care earlier, together with curative and restorative care, when there is an increased intensity of symptoms. The patients eligible for palliative care are those complaining of breathlessness, pain, fatigue and depression, which in some studies accounted for a prevalence much higher than 50%. Among comfort measures for palliation, oxygen is frequently prescribed even when the criteria for long-term home oxygen therapy are not met; however, when compared with air, no benefits on dyspnoea have been found. The only drug with a proven effect on dyspnoea is morphine, but not when it is delivered with a nebuliser. Finally, noninvasive ventilation may be used only as a comfort measure for palliation to maximise comfort by minimising adverse effects.

Concepts: Pulmonology, Pneumonia, Mechanical ventilation, Palliative care, Chronic obstructive pulmonary disease, Palliative medicine, End-of-life care, Terminal sedation

134

Current estimates suggest that approximately 75% of people approaching the end-of-life may benefit from palliative care. The growing numbers of older people and increasing prevalence of chronic illness in many countries mean that more people may benefit from palliative care in the future, but this has not been quantified. The present study aims to estimate future population palliative care need in two high-income countries.

Concepts: Present, Time, Medicine, Future, Palliative care, Palliative medicine, Past, End-of-life care

62

To assess the efficacy of active treatment targeted at underlying disease (TTD)/potentially curative treatments versus palliative care (PC) in improving overall survival (OS) in terminally ill patients.

Concepts: Medicine, Cancer, Medical terms, Palliative care, Illness, Palliative medicine, Hospice, Nursing specialties

55

Palliative care, a medical field that has been practiced informally for centuries, was recently granted formal specialty status by the American Board of Medical Specialties. The demand for palliative care specialists is growing rapidly, since timely palliative care consultations have been shown to improve the quality of care, reduce overall costs, and sometimes even increase longevity.1,2 The field grew out of a hospice tradition in which palliative treatment was delivered only at the end of life, but its role has expanded so that palliative care specialists now also provide palliative treatment in the earlier stages of disease alongside disease-directed . . .

Concepts: Medicine, Cancer, Oncology, Palliative care, Palliative medicine, Hospice, Cicely Saunders

52

Chronic obstructive pulmonary disease (COPD) is a chronic life-limiting disorder characterised by persistent airflow obstruction and progressive breathlessness. Discussions/conversations between patients and clinicians ensure palliative care plans are grounded in patients' preferences. This systematic review aimed to explore what is known about palliative care conversations between clinicians and COPD patients. A comprehensive search of all major healthcare-related databases and websites was performed following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Studies were quality assessed, employing widely used quality-assessment tools, with only papers scoring moderate-to-high quality included. All relevant data were extracted. A narrative synthesis was used to analyse, process and present the final data. The findings indicated that the frequency and quality of palliative care conversations is generally poor. Patients and physicians identified many barriers and important topics were not discussed. Patients and clinicians reported tension between remaining hopeful and the reality of the patients' condition. When discussions did happen, they often occurred at an advanced stage of illness and in respiratory wards and intensive care units. In conclusion, current care practices do not facilitate satisfactory conversations about palliative care between COPD patients and clinicians. This impacts upon the fulfilment of patients' preferences at the end of life.

Concepts: Medicine, Asthma, Systematic review, Palliative care, Chronic obstructive pulmonary disease, Pulmonary hypertension, Palliative medicine, End-of-life care

40

BACKGROUND: The aim of this study was to determine factors associated with the severity of cancer related fatigue (CRF) and predictors of improvement of CRF at the first follow-up visit in patients with advanced cancer referred to outpatient palliative care clinic (OPC). METHODS: We reviewed the records of consecutive patients with advanced cancer presenting to OPC. Edmonton Symptom Assessment System (ESAS) scores were obtained at the initial and subsequent visits between January 2003 and December 2008. All patients received interdisciplinary care led by palliative medicine specialists following an institutional protocol. Fatigue improvement was defined as a reduction of >=2 points in ESAS score relative to the baseline. Descriptive statistics were used to summarize patient characterstics. Univariate analyses were performed and only significant variables were included in multivariate regression analysis to determine factors associated with severity and improvement in CRF. RESULTS: A total of 1778 evaluable patients were analyzed (median age, 59 years; 52% male). The median time between visits was 15 days. Median fatigue scores on the ESAS were 6 at baseline and 5 at follow-up. Severity of all ESAS items and low serum albumin were associated with fatigue at baseline (p < 0.0001). The improvement of fatigue was observed in 586 patients (33%). The hierarchical model showed that fatigue improved over time (b = -0.009; p = 0.0009). low appetite (odds ratio [OR] = 1.09 per point; p = 0.0113) and genitourinary cancer (OR = 1.74 per point; p = 0.0458) were significantly associated with improvement of fatigue. CONCLUSIONS: CRF is strongly associated with physical and emotional symptoms. Genitourinary cancer and low appetite at baseline were associated with successful improvement of fatigue.

Concepts: Regression analysis, Cancer, Oncology, Chemotherapy, Palliative care, Multivariate statistics, Symptomatic treatment, Palliative medicine

30

Little is known about state-level variation in patterns of hospice use, an important indicator of quality of care at the end of life. Findings may identify states where targeted efforts for improving end-of-life care may be warranted.

Concepts: Death, Palliative care, Palliative medicine

29

This article analyses domestic and foreign reactions to a 2008 report in the British Medical Journal on the complementary and, as argued, synergistic relationship between palliative care and euthanasia in Belgium. The earliest initiators of palliative care in Belgium in the late 1970s held the view that access to proper palliative care was a precondition for euthanasia to be acceptable and that euthanasia and palliative care could, and should, develop together. Advocates of euthanasia including author Jan Bernheim, independent from but together with British expatriates, were among the founders of what was probably the first palliative care service in Europe outside of the United Kingdom. In what has become known as the Belgian model of integral end-of-life care, euthanasia is an available option, also at the end of a palliative care pathway. This approach became the majority view among the wider Belgian public, palliative care workers, other health professionals, and legislators. The legal regulation of euthanasia in 2002 was preceded and followed by a considerable expansion of palliative care services. It is argued that this synergistic development was made possible by public confidence in the health care system and widespread progressive social attitudes that gave rise to a high level of community support for both palliative care and euthanasia. The Belgian model of so-called integral end-of-life care is continuing to evolve, with constant scrutiny of practice and improvements to procedures. It still exhibits several imperfections, for which some solutions are being developed. This article analyses this model by way of answers to a series of questions posed by Journal of Bioethical Inquiry consulting editor Michael Ashby to the Belgian authors.

Concepts: Health care, Medicine, Palliative care, United Kingdom, Palliative medicine, End-of-life care, Bioethics, Curative care

29

Little is known regarding the perceptions of parents about end-of-life care for their children. This study describes parental perceptions of the care of hospitalized, terminally ill children in the areas of (1) clinical management, (2) interdisciplinary support, and (3) pain and symptom management.

Concepts: Health care, Medicine, Death, Medical terms, Life, Parent, Palliative medicine, End-of-life care

29

The moral importance of the ‘intention-foresight’ distinction has long been a matter of philosophical controversy, particularly in the context of end-of-life care. Previous empirical research in Australia has suggested that general physicians and surgeons may use analgesic or sedative infusions with ambiguous intentions, their actions sometimes approximating ‘slow euthanasia’. In this paper, we report findings from a qualitative study of 18 Australian palliative care medical specialists, using in-depth interviews to address the use of sedation at the end of life. The majority of subjects were agnostic or atheistic. In contrast to their colleagues in acute medical practice, these Australian palliative care specialists were almost unanimously committed to distinguishing their actions from euthanasia. This commitment appeared to arise principally from the need to maintain a clear professional role, and not obviously from an ideological opposition to euthanasia. While some respondents acknowledged that there are difficult cases that require considered reflection upon one’s intention, and where there may be some ‘mental gymnastics,’ the nearly unanimous view was that it is important, even in these difficult cases, to cultivate an intention that focuses exclusively on the relief of symptoms. We present four narratives of ‘terminal’ sedation - cases where sedation was administered in significant doses just before death, and may well have hastened death. Considerable ambiguities of intention were evident in some instances, but the discussion around these clearly exceptional cases illustrates the importance of intention to palliative care specialists in maintaining their professional roles.

Concepts: Medicine, Death, Palliative care, Palliative medicine, Hospice, End-of-life care, Terminal sedation, Euthanasia