Bertil Axelsson

Palliative chemotherapy during the last month of life

BACKGROUND This study analyses the potential discriminative characteristics for patients with incurable cancer who received palliative chemotherapy during their last month of life. PATIENTS AND METHODS The study includes all patients with epithelial cancer treated with palliative chemotherapy who died in 2008 in northern Sweden. Demographic parameters and care utilization data were registered. Data were analyzed using nonparametric methods. RESULTS Of 374 included patients, 87 (23%) received chemotherapy during the last month of life. These patients had a significantly shorter survival time from first palliative treatment to death, were admitted more frequently to hospital, more often lacked a documented decision to cease treatment, and died less frequently at home. CONCLUSIONS The results indicate covariations between palliative chemotherapy treatments in the last month of life and unfavorable patient outcomes. As almost one of four patients with incurable cancer received their last round of palliative chemotherapy <31 days before death, there is a potential for improved routines.

Place of death correlated to sociodemographic factors A study of 203 patients dying of cancer in a rural Swedish county in 1990

The purpose of this study was to ascertain where patients with malignant disease died and to establish whether such factors as age, sex, marital status, place of residence, diagnosis and interval between diagnosis and death bore any relation to the place of death. All medical records of 203 patients who died in one particular Swedish county in 1990 of cancers of the GI tract, the urogenital organs, the breast, the skin and the thyroid were analysed. Of all 203 patients, 25 (12%) died at home, 49 (24%) in nursing homes and 129 (64%) in hospital. The proportion of home deaths was significantly smaller when the interval from diagnosis to death was less than one month. Death in a nursing home, compared with death in a hospital, was more usual among patients older than 80 years, among those living more than 40 km from the hospital and among those from areas where the local health care centre had a nursing home attached.

Evaluation of a hospital-based palliative support service with particular regard to financial outcome measures

The object of this study was a financial assessment of a hospital-based palliative support service, to be made by comparing the study group with a matched historical control group and a group of contemporary reference patients. The staff consisted of one full-time nurse supported by a surgeon one half-day per week. The patients in the study group utilized fewer institutional days than the control group, according to such parameters as duration of terminal hospitalization (P < 0.05), ratio of days at home to total inclusion days (P < 0.001), and days at home during last two months of life (P < 0.01). These three outcome measures all focus on the most care-intensive last months of life and appeared to be sensitive enough to identify economic advantages of palliative care intervention. The palliative support service defrayed its own costs and in excess of that saved another SK17000 per patient (US

Assessment of Quality of Life in Palliative Care: Psychometric Properties of a Short Questionnaire

2500).

Developing a national quality register in end-of-life care: The Swedish experience:

The psychometric properties of a short but comprehensive quality-of-life instrument, developed especially for cancer patients in the palliative care setting are presented. Items from physical, psychological, social and existential domains are included. The findings suggest that the AQEL (Assessment of Quality of Life at the End of Life) instrument is both valid and reliable, but further trials with more patients are needed.

The Assessment of Quality of life at the End of Life (AQEL) questionnaire: a brief but comprehensive instrument for use in patients with cancer in palliative care

Background: The complexity of end-of-life care, represented by a large number of units caring for dying patients, different types of organizations and difficulties in identification and prognostication, signifies the importance of finding ways to measure the quality of end-of-life care. Aim: To establish, test and manage a national quality register for end-of-life care. Design: Two questionnaires were developed with an attempt to retrospectively identify important aspects of the care delivered during the last week in life. An internet-based IT platform was created, enabling the physician and/or nurse responsible for the care during the last week in life to register answers online. Setting: Units caring for dying people, such as hospital wards, home care units, palliative in-patient care units and nursing facilities. Results: The register received status as a National Quality Register in 2006. More than 30,000 deaths in nursing facilities, hospital wards, palliative in-patient units and private homes were registered during 2010, representing 34% of all deaths in Sweden and 58% of the cancer deaths. Conclusions: We have shown that it is feasible to establish a national quality register in end-of-life care and collect data through a web-based system. Ongoing data analyses will show in what way this initiative can lead to improved quality of life for patients and their families. There is an ongoing process internationally to define relevant outcome measures for quality of care at the end-of-life in different care settings; the registry has a potentially important role in this development.

Registration in a quality register: a method to improve end-of-life care—a cross-sectional study

PurposeThe aim of the study was to further validate the Assessment of Quality of life at the End of Life (AQEL) questionnaire, to explore whether conceptually consistent scales could be confirmed and how the instrument relates to other widely used and validated HRQL instruments.MethodsA total of 106 patients with lung cancer in palliative care completed the 20-item AQEL, the EORTC QLQ-C30, Hospital Anxiety and Depression Scale (HADS), Sense of Coherence (SOC-13) and Social Support Survey (SSS). Construct validity of the AQEL was tested by multitrait scaling, principal components analysis, inter-scale correlations and known-groups comparisons.ResultsFive scales were supported by multitrait scaling: Basic function, Activity, Emotional function, Cognitive function and Existential needs, with satisfactory (>.7) internal consistency for the latter three and intermediate (>.5) for the remaining two. A Social support scale was supported by principal components analysis, but exhibited a low internal consistency. Items on health care issues and physical symptoms worked best as individual items. Expected correlations with other instruments were found for all scales. Activity was sensitive to different levels of functioning as defined by performance status.ConclusionsThis study provided some evidence for the validity of the AQEL and its feasibility in patients with cancer in palliative care.

Validation study of an end-of-life questionnaire from the Swedish Register of Palliative Care.

Objectives Structured methods to assess and support improvement in the quality of end-of-life care are lacking and need to be developed. This need is particularly high outside the specialised palliative care. This study examines whether participation in a national quality register increased the quality of end-of-life care. Design This study is a cross-sectional longitudinal register study. Setting The Swedish Register of Palliative Care (SRPC) collects data about end-of-life care for deaths in all types of healthcare units all over Sweden. Data from all 503 healthcare units that had reported patients continuously to the register during a 3-year period were analysed. Primary and secondary outcome measures Data on provided care during the last weeks of life were compared year-by-year with logistic regression. Participants The study included a total 30 283 patients. The gender distribution was 54% women and 46% men. A total of 60% of patients in the study had a cancer diagnosis. Results Provided end-of-life care improved in a number of ways. The prevalence of six examined symptoms decreased. The prescription of ‘as needed’ medications for pain, nausea, anxiety and death rattle increased. A higher proportion of patients died in their place of preference. The patients next of kin was more often offered a follow-up appointment after the patients death. No changes were seen with respect to providing information to the patient or next of kin. Conclusions Participation in a national quality register covariates with quality improvements in end-of-life care over time.

Analgesic effect of paracetamol on cancer related pain in concurrent strong opioid therapy. A prospective clinical study.

Abstract Quality in health care is important to measure and palliative care is no exception. The Swedish Register of Palliative Care (SRPC) is a national quality register that focuses on the last week of life. It collects data with an end-of-life questionnaire (ELQ), which is validated in this study. Material and methods. This study included 169 consecutive patients who had died at a palliative unit. That unit had developed a computerized end-of-life medical record module that enabled a comparison between reported data and medical records, illustrating the validity of the registry questionnaire. The paper versions of the ELQs filled in at the unit were also inspected to determine the extent of registration mistakes when completing the web questionnaire. Results. Data from the medical records and data from the ELQs reported to the SRPC showed a congruity of 22 to 100%. A working limit of acceptable congruity was set to 80%. Eight questions fell below that line. Some of these differences were caused by systematic errors. The paper versions filled in at the unit and the data from the ELQs reported to the SRPC had a congruity of between 96% and 100%, with the exception of one question about pain evaluation, which had 91% congruity. Discussion. The results in this study will be used to improve and further develop the register. Some questions need to be more specific to promote more valid registrations. Consensus on quality issues in end-of-life care would simplify the work of writing and answering the questionnaire. It is desirable to perform a similar study at hospital wards that do not specialize in palliative care; however, the anticipated lack of palliative documentation could make such a study difficult to perform.

Is there an additive analgesic effect of paracetamol at step 3? A double-blind randomized controlled study.

Introduction. In palliative cancer care, when approaching death, swallowing difficulties and the burden of tablet intake frequently makes us reconsider each individual drug prescribed. Through the last two decades the routine of always combining a strong opioid with paracetamol has been widely spread in Sweden. Clinical experience has challenged this routine as many patients seem to manage equally well without paracetamol. To find out whether this might be of clinical importance, we wanted to perform a more systematic registration. Material and methods. Thirty-four incurable cancer patients with well controlled pain (NRS <4), treated by specialised palliative home care teams, with ongoing medication with the strong opioid paracetamol combination was recruited to this prospective clinical study. The effect of completely stopping paracetamol medication was evaluated four days later at follow-up. Results. At follow-up nine patients (26%) felt more pain compared to when they entered the study, two patients (6%) felt less pain and 23 (68%) felt no difference. When asked about their preference about future paracetamol treatment 18 patients (53%) wanted to stop taking it, six patients (18%) wanted to continue with regular paracetamol medication as before, and ten patients (29%) wanted to take paracetamol as needed. No clinical predictors of paracetamol response could be identified. Discussion. The results of this study indicate that a critical evaluation, in every patient, of the subjective additive analgesic effect of paracetamol in concurrent strong opioid therapy is advisable and that stopping paracetamol medication not necessarily implies increased pain. Rather in some patients the cessation of paracetamol medication is experienced as a relief as pain control is maintained with a lesser tablet burden.