The Swedish Register of Palliative Care (SRPC) is a national quality register that collects data about end-of-life care from healthcare providers that care for dying patients. Data are used for quality control and research. Data are mainly collected with an end-of-life questionnaire (ELQ), which is completed by healthcare staff after the death of a patient. A previous validity assessment of the ELQ showed insufficient validity in some items including symptom relief. The aim of this study was to examine the validity of the revised ELQ.
Data from 100 consecutive patients' medical records at two specialised palliative care units were used to complete new ELQs, which were then compared to the ELQ registrations from the SRPC for the same patients. The level of agreement was calculated for each ELQ item. To account for the possibility of the agreement occurring by chance, Cohen's kappa was calculated for suitable items. To examine the extent of registration mistakes when transferring the paper form to the web, the original paper versions of the ELQ filled out at the units were compared to data from the ELQs reported to the SRPC.
Level of agreement between ELQ registrations from the SRPC and the new ELQs based on the medical records varied between 0.55 and 1.00, where 24 items showed level of agreement above 0.80 and 9 items showed level of agreement below 0.80. Cohen's kappa with 95% confidence intervals was calculated for 24 items. The kappa values showed that two items had poor agreement, four fair agreement, 11 moderate agreement, five good agreement and two very good agreement. The level of agreement varied between 0.93 and 1.00 when comparing the ELQ registrations in the SRPC and the paper forms.
The revised ELQ contains more items with high levels of agreement between registrations in the SRPC and notes in the patients' medical records when compared to the previous version. Validating issues around symptom assessment remains a challenge in our model of quality assessment.
Research related to spirituality and health has developed from relative obscurity to a thriving field of study over the last 20 years both within palliative care and within health care in general. This paper provides a descriptive review of the literature related to spirituality and health, with a special focus on spirituality within palliative and end-of-life care. CINAHL and MEDLINE were searched under the keywords "spirituality" and "palliative." The review revealed five overarching themes in the general spirituality and health literature: (1) conceptual difficulties related to the term spirituality and proposed solutions; (2) the relationship between spirituality and religion; (3) the effects of spirituality on health; (4) the subjects enrolled in spirituality-related research; and (5) the provision of spiritual care. While the spirituality literature within palliative care shared these overarching characteristics of the broader spirituality and health literature, six specific thematic areas transpired: (1) general discussions of spirituality in palliative care; (2) the spiritual needs of palliative care patients; (3) the nature of hope in palliative care; (4) tools and therapies related to spirituality; (5) effects of religion in palliative care; and (6) spirituality and palliative care professionals. The literature as it relates to these themes is summarized in this review. Spirituality is emerging largely as a concept void of religion, an instrument to be utilized in improving or maintaining health and quality of life, and focussed predominantly on the "self" largely in the form of the patient. While representing an important beginning, the authors suggest that a more integral approach needs to be developed that elicits the experiential nature of spirituality that is shared by patients, family members, and health care professionals alike.
Denmark's first palliative medicine research unit is now being set up at Bispebjerg Hospital, with single-room and two double-room ward. The multidisciplinary team consists of doctors, a psychologist, nurses, a physiotherapist, an ergotherapist, a medical social worker, a priest and a dietician. An out-patient facility is also being established to enable patients to choose between hospitalisation out-patient treatment or home treatment by appropriate staff. Another aspect of palliative medicine is care of the patient's family members. The intervention offered at our facility is led by a psychologist, and consists primarily of counselling. With its limited clinical opacity, the department of palliative medicine is first and foremost a research and development facility. The first chair in palliative medicine in Denmark was conferred upon the department in 1998.
Palliative care patients experience many debilitating symptoms and functional loss, but few longitudinal studies on the subject are available.
To assess the symptoms and functional status of patients admitted to specialised palliative care, to investigate whether changes occur over the admission period, and to establish whether symptoms and physical and cognitive function differ, based on the service setting. In addition, to participate in the development of the interRAI Palliative Care instrument (interRAI PC).
A prospective longitudinal study (N=123) was conducted at three time points: at admission to specialised palliative care, 14 days post-admission, and at discharge or death. The interRAI PC version 8 was used for data collection. Descriptive statistics were used, together with the Friedman statistical test and Wilcoxon post-hoc test.
Patients experienced a wide spectrum of symptoms; the most frequent were fatigue, loss of appetite, pain, difficulty sleeping, insufficient nutritional intake and nausea. Some symptoms stayed relatively stable over time, but others increased, while physical and cognitive function decreased over time. The interRAI PC version 8 proved comprehensive and simple to use.
Patients experienced a significant symptom burden and functional loss from admission to discharge or death. Symptoms indicating progressive deterioration became more frequent and severe, while physical and cognitive function decreased at all levels. Overall, inpatients had more symptoms and functional decline than home-care patients. The interRAI PC version 8 proved valuable in collecting clinical information and detecting changes over time as other interRAI suite instruments.