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Concept: Hospice

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Early palliative care is increasingly recommended but seldom practised. We sought to examine perceptions of palliative care among patients with advanced cancer and their caregivers.

Concepts: Cancer, Oncology, Chemotherapy, Palliative care, Hospice, Nursing specialties

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People with advanced illness usually want their healthcare where they live-at home-not in the hospital. Innovative models of palliative care that better meet the needs of seriously ill people at lower cost should be explored.

Concepts: Health care, Medicine, Health, Patient, Palliative care, Illness, Hospice, Curative care

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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

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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

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BACKGROUND: Home-based models of hospice and palliative care are promoted with the argument that most people prefer to die at home. We examined the heterogeneity in preferences for home death and explored, for the first time, changes of preference with illness progression. METHODS: We searched for studies on adult preferences for place of care at the end of life or place of death in MEDLINE (1966–2011), EMBASE (1980–2011), psycINFO (1967–2011), CINAHL (1982–2011), six palliative care journals (2006–11) and reference lists. Standard criteria were used to grade study quality and evidence strength. Scatter plots showed and percentage preferring home death amongst patients, lay caregivers and general public, by study quality, year, weighted by sample size. RESULTS: 210 studies reported preferences of just over 100,000 people from 34 countries, including 34,021 patients, 19,514 caregivers and 29,926 general public members. 68% of studies with quantitative data were of low quality; only 76 provided the question used to elicit preferences. There was moderate evidence that most people prefer a home death–this was found in 75% of studies, 9/14 of those of high quality. Amongst the latter and excluding outliers, home preference estimates ranged 31% to 87% for patients (9 studies), 25% to 64% for caregivers (5 studies), 49% to 70% for the public (4 studies). 20% of 1395 patients in 10 studies (2 of high quality) changed their preference, but statistical significance was untested. CONCLUSIONS: Controlling for methodological weaknesses, we found evidence that most people prefer to die at home. Around four fifths of patients did not change preference as their illness progressed. This supports focusing on home-based care for patients with advanced illness yet urges policy-makers to secure hospice and palliative care elsewhere for those who think differently or change their mind. Research must be clear on how preferences are elicited. There is an urgent need for studies examining change of preferences towards death.

Concepts: Palliative care, Change, Hospice, Preference

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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

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In the United Kingdom hospice day care services are the fastest growing yet least researched of the palliative care services. Using photo-elicitation interviews with 11 day care patients attending a specialist hospice day care setting we explored their experiences of the hospice as a place and how these changed over time. Informed by concepts from existential and humanistic geography we propose three existential modes of being - Drifting, Sheltering and Venturing - which characterize the patients' lived experiences of the hospice. Our phenomenological analysis shows that the hospice is (re)constructed purposefully to achieve a sense of ‘home’ and ‘homelikeness’, creating an important therapeutic landscape for patients.

Concepts: Geography, Palliative care, United Kingdom, Hospice, Cicely Saunders

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Abstract Background: Families with young children often struggle to talk about and cope with a parent’s life-threatening illness and potential death. Adult interdisciplinary palliative medicine teams often feel unprepared to facilitate the open communication with these children that has been shown to reduce anxiety, depression, and other behavioral problems. In pediatric settings, child life specialists routinely provide this support to hospitalized children as well as their siblings and parents. Although these services are the standard of care in pediatrics, no research reports their use in the care of children of adults with serious illness. Objective: Our aim is to describe a pilot child life consultation service for the children of seriously ill adult inpatients. Design: We summarize the support needs of these children, their families, and the medical staff caring for them and report our experience with developing a child life consultation service to meet these needs. Setting/Subjects: Our service assists seriously ill adult inpatients and their families in a university medical center. Results: Informal feedback from families and staff was uniformly positive. During consultations, family and child coping mechanisms were assessed and supported. Interventions were chosen to enhance the children’s processing and self-expression and to facilitate family communication. Conclusion: All hospitals should consider providing broad-based in-service training enabling their staff to improve the support they offer to the children of seriously ill parents. Medical centers with access to child life services should consider developing a child life consultation service to further enhance this support. More research is needed to evaluate both the short- and long-term clinical impact of these interventions. AA was a 54-year-old man with severe liver damage caused by blunt trauma during a farming accident months earlier. His course was complicated by hemorrhage, multiple infections, and surgeries, and ultimately multi-organ system failure requiring extensive life-sustaining interventions. The palliative care service was consulted by the intensive care unit (ICU) team 3 days prior to AA’s death. A family meeting was held with his wife, sister, and sister-in-law, during which they chose not to further escalate medical interventions. It was clear to all involved that AA was dying. It was equally clear that it would be hard to let him go. Foremost among his family members' many concerns was how they would talk to his three children, ages 7 to 15 years old, during a planned visit to the hospital. Struggling with her own sense of impending loss, AA’s wife needed emotional support and the words to tell her children that their father was going to die. The children needed help to hear and process those words. A child life specialist was consulted.

Concepts: Family, Medicine, Oncology, Palliative care, Hospice, Suffering, Cicely Saunders, Child life specialist

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The natural history of heart failure (HF) is characterized by a progressive decline in functional capacity, punctuated by acute heart destabilization episodes which contribute to a spiraling worsening course. Advanced HF affects one in four patients who are referred to the hospital for the syndrome and has an estimated yearly incidence of 12 000 new cases in Italy. Life expectancy is very limited, and in general less than 50% of advanced HF patients are alive at 1-2 years. Advanced HF patients show a high, not modifiable mortality, severe symptoms and impaired quality of life. Treatment goals should focus on the improvement of symptoms and quality of life, the aims of palliative care. Palliative consultations during hospital admissions reduce the number of interventions and procedures in the last stages of life, the length of stay in the intensive care unit and general ward. HF patients who receive home palliative care are more likely to die at home, in accordance with their expressed will. The research project RF-MAR-2007-67955 aims to analyze, through a prospective observational registry, the palliative care needs of HF patients in Italy, to answer the gaps in knowledge on symptom changes during the terminal stages of the disease, on the quality of communication between healthcare professionals, patients and their families and caregivers' needs.

Concepts: Health care, Health care provider, Disease, Patient, Life expectancy, Symptomatic treatment, Hospice, Terminal sedation