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404 <strong>EAPC</strong> Abstracts<br />

larger study of 100 patients newly referred to a hospice community palliative<br />

care service in Central Scotland. A grounded theory and narrative approach<br />

was taken to analysis. Results: Key themes were physical (debility, dependence<br />

and expectations); psychological (understanding, uncertainty and vulnerability);<br />

social (communication and family) and spiritual (faith, reflection<br />

and hope). The unifying theme was control. Over the time from referral to<br />

death, patients’ perspectives evolved in a positive direction: Patients adapted<br />

and became reconciled to death. Despite this positive trend, all of the patients<br />

suffered transient negative episodes related to acute, unpredictable exacerbations<br />

of distress in any one of the physical, psychological, social or spiritual<br />

domains. The distress was induced by a sudden change in circumstances<br />

inconsistent with the established and familiar pattern of change.<br />

Conclusions: For patients with advanced cancer, perspectives on illness<br />

relate to physical, psychological, social and spiritual factors. The fundamental<br />

issue is control maintenance. Patients appear to become reconciled to<br />

death, facing it positively, despite experiencing periodic, unpredictable, acute<br />

exacerbations of distress. These episodes, which occurred throughout the<br />

final journey, reflected the transient loss of control associated with unexpected<br />

change. The process of adaptation continued once control was regained.<br />

16 Oral Presentation<br />

End of life care and quality of death<br />

How effective is the control of and communication about agitation<br />

and distress in the last 48 hours of life<br />

Authors: Joanna Dunn Medicine St Christopher’s Hospice UNITED<br />

KINGDOM<br />

Emma Hall St Christopher’s Hospice London UNITED KINGDOM<br />

Jane McManus St Christopher’s Hospice London UNITED KINGDOM<br />

Holly Young St Christopher’s Hospice London UNITED KINGDOM<br />

Background: The prevalence of end of life sedation appears to be increasing.<br />

There is insufficient evidence about effectiveness of medication and communication<br />

with patients/families. Aims: Relate sedative dose titration and drug<br />

review to effectiveness of relief of agitation in the last 48 hours of life.<br />

Identify areas for improvement. Methods: Retrospective case-note review of<br />

last 48 hours of life of 100 consecutive hospice deaths. Results: 99 evaluable<br />

patients. Median age 73 years (range 33–93). 49 males. 90 had cancer. 69/99<br />

(69%) patients were agitated at some time in the last 48 hours of life. 117/273<br />

(43%) stat doses were recorded as effective. 46/115 (40%) stat doses of sedative<br />

at 48–24 hours pre death and 76/158 (48%) in the last 24 hours were<br />

given simultaneously with another drug, usually analgesia. The median number<br />

of stat doses per patient was 2 (range 1–10) at 48–24 hours and 2 (range<br />

1–9) in the last 24 hours. 29/99 (29%) required 3 or more stat doses in the last<br />

48 hours.57/99 (58%) patients received continuous infusions of sedatives in<br />

the last 48 hours of life, of whom 22/57 (39%) had an increase or change in<br />

the last 24 hours and 11/57 (19%) required combinations of sedatives.<br />

Midazolam was the most frequently used drug for both continuous (median<br />

20mg; range 5–100mg) and stat use (median 2.5mg; range 1.25–20mg), followed<br />

by levomepromazine (median continuous dose 25mg; range<br />

6.25–250mg, median stat dose 12.5mg; range 6.25–50mg). 3 patients<br />

required phenobarbital. There were discussions about sedation with families<br />

in 30/68 (44%) cases. Conclusions: Agitation was common in the last<br />

48 hours of life, sometimes intermittently. Documentation of communication<br />

and drug effectiveness could be improved. Doses were similar to previous<br />

studies. Issues for further investigation include co-administration of sedatives<br />

and analgesics, dose titration of stat and continuous doses and the use of<br />

sedative drugs in combination for more resistant agitation.<br />

17 Oral Presentation<br />

End of life care and quality of death<br />

Palliative Care in Dutch Nursing Homes: Dying with Dignity<br />

Authors: Luc Deliens Dept. of Social Med. Vrije Universiteit Amsterdam-<br />

VUMC CANADA<br />

Dr. H Brandt VU Free University Medical Center Amsterdam<br />

NETHERLANDS<br />

Miel W Ribbe VU Free University Medical Center Amsterdam<br />

NETHERLANDS<br />

Background: Nursing homes (NHs) are less well studied than hospices or<br />

hospitals regarding palliative care. For palliative care information is<br />

≠needed about the patients, symptoms, direct causes and underlying diseases,<br />

and incidence of terminal ill NH patients. Methods: Prospective<br />

observational cohort study in 16 NHs in the Netherlands. All long-term<br />

care patients assessed by an NH physician to have a life expectancy of<br />

6 weeks or less were enrolled (n=516). The symptoms-and-signs list was<br />

constructed from the MDS-RAI2.0. The validated Dutch Classification of<br />

Diseases for Nursing Home Medicine (CvZ-V)16 was used for registration<br />

of the direct cause of the terminal phase and the underlying disease.<br />

Results: The terminal disease phase was marked with symptoms of low<br />

fluid and food intake, general weakness, and respiratory problems or dyspnea.<br />

Patients were frequently in a state of somnolence and experienced<br />

recurrent fever. Direct causes of these conditions were diseases of the respiratory<br />

system and general disorders. The 2 main underlying diseases of<br />

the terminal phase were mental disorders (dementia) and circulatory<br />

diseases. For both groups, symptoms of (very) little/no fluid intake, generalized<br />

weakness, somnolence and cachexia/anorexia were common. For<br />

patients with mental disorders (mainly dementia) the beginning of the terminal<br />

phase was marked with problems of nutritional intake, and recurrent<br />

fever. In the circulatory group, this beginning was mostly the presence of<br />

respiratory problems and/or dyspnea. Cancer was the underlying disease in<br />

only 12% of the patients, showing a different pattern of symptoms compared<br />

to residents without cancer. Conclusions: A wide variety of burdensome<br />

signs and symptoms are seen in the terminal phase of nursing home<br />

patients with fluid and food intake-problems, general weakness, and dyspnea,<br />

as the most important. For patients without cancer in Dutch NHs, the<br />

terminal disease phase is difficult to predict, and once diagnosed, patient<br />

survival time is short.<br />

18 Oral Presentation<br />

End of life care and quality of death<br />

Care for patients in the last three months of life: findings from<br />

the nationwide SENTI-MELC study in Belgium<br />

Authors: Lieve Van den Block End-of-Life Care Research Group Vrije<br />

Universiteit Brussel BELGIUM<br />

Nathalie Bossuyt Wetenschappelijk Instituut Volksgezondheid Brussels<br />

BELGIUM<br />

Viviane Van Casteren Wetenschappelijk Instituut Volksgezondheid Brussels<br />

BELGIUM<br />

Katrien Drieskens Vrije Universiteit Brussel, End-of-Life Care Research<br />

Group Brussels BELGIUM<br />

Sabien Bauwens Vrije Universiteit Brussel Brussels BELGIUM<br />

Reginald Deschepper Vrije Universiteit Brussel, End-of-Life Care Research<br />

Group Brussels BELGIUM<br />

Luc Deliens Vrije Universiteit Brussel, End-of-Life Care Research Group<br />

Brussels BELGIUM<br />

Background: The WHO has identified palliative care as an issue of great<br />

clinical and public health importance. However, data describing end-of-life<br />

care on a societal or population-based level are lacking. This is the first<br />

nationwide study to measure end-of-life care in a representative sample of<br />

dying persons, in terms of involvement of caregivers, access to specialist<br />

palliative care, treatment goals, and physical-psychosocial-spiritual components<br />

of care. Methods: We performed a one-year nationwide mortality follow-back<br />

study in 2005, Belgium. Data were collected within the Sentinel<br />

Network Monitoring End-of-Life Care (SENTI-MELC) study. All 205 general<br />

practitioners within the Sentinel Network of GPs, an existing epidemiological<br />

surveillance system representative of all Belgian GPs, reported<br />

weekly on the final three months of life of every patient in their practice who<br />

died non-suddenly. Results: We studied 892 deaths. GPs, nurses/geriatric

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