Implementation of the integrated palliative care outcome scale in acute care settings - a feasibility study.

OBJECTIVE: Although hospitals have been described as inadequate place for end-of-life care, many deaths still occur in hospital settings. Although patient-reported outcome measures have shown positive effects for patients in need of palliative care, little is known about how to implement them. We aimed to explore the feasibility of a pilot version of an implementation strategy for the Integrated Palliative care Outcome Scale (IPOS) in acute care settings. METHOD: A strategy, including information, training, and facilitation to support the use of IPOS, was developed and carried out at three acute care units. For an even broader understanding of the strategy, it was also tested at a palliative care unit. A process evaluation was conducted including collecting quantitative data and performing interviews with healthcare professionals.ResultFactors related to the design and performance of the strategy and the context contributed to the results. The prevalence of completed IPOS in the patient's records varied from 6% to 44% in the acute care settings. At the palliative care unit, the prevalence in the inpatient unit was 53% and the specialized home care team 35%. The qualitative results showed opposing perspectives concerning the training provided: Related to everyday work at the acute care units and Nothing in it for us at the palliative care unit. In the acute care settings, A need for an improved culture regarding palliative care was identified. A context characterized by A constantly increasing workload, a feeling of Constantly on-going changes, and a feeling of Change fatigue were found at all units. Furthermore, the internal facilitators and the nurse managers' involvement in the implementation differed between the units.Significance of the resultsThe feasibility of the strategy in our study is considered to be questionable and the components need to be further explored to enhance the impact of the strategy and thereby improve the use of IPOS.

Implementation of national palliative care guidelines in Swedish acute care hospitals: A qualitative content analysis of stakeholders' perceptions.

In high-income countries a large proportion of all deaths occur in hospitals. A common way to translate knowledge into clinical practice is developing guidelines for different levels of health care organisations. During 2012, national clinical guidelines for palliative care were published in Sweden. Later, guidance for palliative care was issued by the National Board of Health and Welfare. The aim of this study was two-fold: to investigate perceptions regarding these guidelines and identify obstacles and opportunities for implementation of them in acute care hospitals. Interviews were conducted with local politicians, chief medical officers and health professionals at acute care hospitals. The Consolidated Framework for Implementation Research was used in a directed content analysis approach. The results showed little knowledge of the two documents at all levels of the health care organisation. Palliative care was primarily described as end of life care and only few of the participants talked about the opportunity to integrate palliative care early in a disease trajectory. The environment and culture at hospitals, characterised by quick decisions and actions, were perceived as obstacles to implementation. Health professionals' expressed need for palliative care training is an opportunity for implementation of clinical guidelines. There is a need for further implementation of palliative care in hospitals. One option for further research is to evaluate implementation strategies tailored to acute care.

Unresolved grief and its consequences. A nationwide follow-up of teenage loss of a parent to cancer 6-9 years earlier.

PURPOSE: The early loss of a parent is a tragedy and a serious life event. This study investigated grief resolution and morbidity in cancer-bereaved teenagers 6 to 9 years after the loss of a parent to cancer. METHODS: In a nationwide population-based study of 622 of 851 (73 %) youths who as teenagers 6 to 9 years earlier had lost a parent to cancer, we explored the magnitude of unresolved grief and its association with psychological and physiological morbidity. Participants answered a study-specific anonymous questionnaire including questions about if they had worked through their grief and about their current health. RESULTS: Six to nine years post-loss 49 % reported unresolved grief (8 % no and 41 % a little grief resolution). They had, in comparison with youths reporting resolved grief, statistically significantly elevated risks, e.g. for insomnia (sons' relative risk (RR) 2.3, 95 % CI 1.3-4.0; daughters' RR 1.7, 95 % CI 1.1-2.7), fatigue (sons' RR 1.8, 95 % CI 1.3-2.5; daughters' RR 1.4, 95 % CI 1.1-1.7) and moderate to severe depression, i.e. score >9, PHQ-9 (sons' RR 3.6, 95 % CI 1.4-8.8; daughters' RR 1.8, 95 % CI 1.1-3.1). Associations remained for insomnia in sons, exhaustion in daughters and fatigue in both sons and daughters when depression, negative intrusive thoughts and avoiding reminders of the parents' disease or death were included in a model. CONCLUSIONS: Approximately half of cancer-bereaved youth report no or little grief resolution 6 to 9 years post-loss, which is associated with fatigue, sleeping problems and depressive symptoms.

Variation in medication use in cancer patients at the end of life: a cross-sectional analysis.

PURPOSE: Despite advances in cancer treatment, patients still die with unnecessary suffering. Therefore, high-quality end-of-life care is needed. Variations in medication use at the end of life may suggest areas for improvement. This study aims to describe the use of medications during the last days of life of cancer patients and to explore the possibility of using it as a quality measure. METHODS: We conducted an international survey on experts' opinions regarding potentially inappropriate medications for dying patients. Subsequently, a chart review of deceased cancer patients was conducted, which assessed the current medication use in different settings. RESULTS: The mean number of medications used in the last 3 days of life was 4.8 (SD 2.1). Hospital patients were less likely than hospice patients to receive opioids, midazolam, haloperidol, and drugs for pulmonary secretions or nausea/vomiting. Over 90 % of experts rated 12 medications as unlikely to be appropriate. Hospital patients were more likely than hospice patients to receive these potentially inappropriate medications. Before the implementation of an end-of-life care pathway, hospital patients had a higher probability, than after, to receive potentially inappropriate medication. Moreover, after implementation of such pathway, patients for whom a pathway was not used were more likely to receive potentially inappropriate medications than patients for whom it was used. CONCLUSION: Medication use at the end of life varies widely by setting, both for potentially appropriate and inappropriate medications. Combining experts' opinion and current medication use resulted in the identification of 16 medications that might be used to assess the quality of cancer care at the end of life.

Health care-related predictors of husbands' preparedness for the death of a wife to cancer--a population-based follow-up.

BACKGROUND: If we can learn how to increase preparedness before the death of a loved one, we can possibly decrease the next-of-kin's long-term morbidity. METHODS: In a population-based study, 691 of 907 (76%) men in Sweden who lost a wife to cancer 4-5 years earlier answered an anonymous questionnaire about their preparedness at the time of their wife's death as well as potential predictors for preparedness. RESULTS: A final logistic regression model indicates following predictors for preparedness, among others: the length of the widower's intellectual awareness time before his wife's death [relative risk (RR) 4.1, confidence interval (CI) 2.7-6.1], the widower could take in the information that his wife's disease could not be cured (RR 3.5, CI 2.3-5.2), the couple had arranged their economical affairs (RR 1.5, CI 1.3-1.7), the wife had stayed at a palliative care unit during her last months of life (RR 1.2, CI 1.1-1.4) and health care personnel supported the husband to participate in his wife's care (RR 1.6, CI 1.3-2.1). CONCLUSIONS: We identified several care-related factors that may influence the preparedness of men before their wife's death to cancer. These factors can be considered in future intervention studies aiming at influencing preparedness before the death of a loved one.

Palliative day care--a study of well-being and health-related quality of life.

AIM: The aim of the study was to study the outcomes of palliative day care, in terms of health-related quality of life and the emotional well-being of cancer patients participating in a palliative day care programme for a period of five weeks, compared with a group of palliative cancer patients not participating in day-care. METHODS: The day care sample comprised of patients in a palliative day care programme delivered in two different day care facilities. Participants in the comparison group were recruited from a palliative home care service facility. All patients had a cancer diagnosis. The participants were invited to respond to two questionnaires once a week for a period of five weeks; the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-30) and the Mood Adjective List (MACL). RESULTS: The participants in the day care group and the comparison group reported similar levels of perceived functioning and symptoms, as measured by the EORTC QLQ-30, with no significant differences between the groups. However, the day care group reported higher levels of emotional well-being as measured by the MACL than the comparison group reported, although these differences were not statistically significant.

The existential impact of starting corticosteroid treatment as symptom control in advanced metastatic cancer.

Treatment with corticosteroids often results in increased appetite, reduced nausea and improved well-being in patients with advanced metastatic cancer. Therefore, we have studied the existential impact of starting corticosteroid treatment as symptom control in this patient group using qualitative content analysis with both a descriptive and an interpretative focus. Ten patients were interviewed before and after 1 week of treatment with 4 mg betamethasone. Prior to treatment, patients reported distressing symptoms, deterioration and diminished autonomy, symbolising threat and death. Corticosteroid treatment produced symptom relief in the majority of the patients. They reported enhanced physical abilities and experienced feelings of a more normalized life and strengthened autonomy, symbolising health and hope. This transfer from threat to hope has important existential consequences in end-of-life care and should be addressed when communicating goals of treatment and care with the patient and family.

Fatigue dimensions in patients with advanced cancer in relation to time of survival and quality of life.

To understand the relation between fatigue and patients emotional situation at the end of life, this cross-sectional study aimed to explore the association between multidimensional aspects of fatigue, emotional functioning and quality of life (QoL) in patients with advanced cancer at the end of life. Patients with advanced cancer answered fatigue related measurements (Borg Category Ratio-10 scale, Multidimensional Fatigue Inventory-20, Swedish Occupational Fatigue Inventory and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core-30), when admitted for specialised palliative care. A total of 228 patients with a median length of survival of 63 days were included. In relation to time of survival, fatigue increased closer to death, in both global and multidimensional aspects, as well as the patient's experience of being sleepy. Marital status was found to affect the experience of fatigue in both global and multidimensional ratings of fatigue. The association between the experience of fatigue and feelings of being tense, worried, irritable or depressed and rated QoL decreased and was not evident closer to death. Fatigue in all dimensions increased, as patients got closer to death. The association between fatigue and both QoL and negative emotions faded away during the last days and weeks of life.

Quality of life in terminal care--with special reference to age, gender and marital status.

OBJECTIVES: This study was conducted to explore symptoms, other quality of life (QoL) aspects and impact of age, gender, marital status, cancer diagnosis and time of survival in patients with advanced cancer admitted to palliative care. PATIENTS AND METHODS: A cross-sectional study of 278 cancer patients completing the European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30 at referral to palliative care. MAIN RESULTS: Gynaecological and gastro-intestinal tract cancers were the most common. Mean age was 67 years; 62% were female. Median survival was 43 days and 39% lived less than 30 days. Patients reported impaired general QoL and high occurrence of symptoms (44 and 100% for diarrhoea and fatigue, respectively). Fatigue, appetite loss and dyspnoea were reported as most severe (mean values of 80, 59 and 51, respectively, 0-100 scales). Married/cohabiting patients and younger patients reported lower functional abilities and more symptoms. No impact of diagnoses on QoL parameters was found. Patients closest to death did not differ significantly from those with longer time to live in social functioning. CONCLUSION: Young and married patients may be at higher risk for perceived low quality of life at the end of life. EORTC QLQ-C30 could be used as a clinical tool for screening of symptoms and reduced functioning in palliative care, but may not be appropriate for use in the most severely ill patients. Limitations of the instrument and the need for robust measurements of patient mix are discussed. Proxy ratings of physical symptoms and nurse responsibility to include QoL assessment in daily practice would increase attrition and decrease selection bias.

The unrecognised cost of cancer patients' unrelieved symptoms:a nationwide follow-up of their surviving partners.

We investigated if a cancer patient's unrelieved symptoms during the last 3 months of life increase the risk of long-term psychological morbidity of the surviving partner. All women (n=506) living in Sweden under 80 years of age, who lost their husband/partner owing to cancer of the prostate in 1996 or of the urinary bladder in 1995 or 1996 were asked to answer an anonymous postal questionnaire, 2-4 years after their loss. The widows' psychological morbidity was associated with the patient's unrelieved mental symptoms. When the patient was perceived to have been very anxious during last three months of life (compared to no observed symptoms) the relative risks for the widows' psychological morbidity were: 2.5 (1.4-4.3) for depression and 3.4 (1.4-8.2) for anxiety. When comparing reports of the patient's pain (much vs no), the relative risks were 0.8 (0.5-1.2) for widowhood depression, and 0.8 (0.4-1.7) for widowhood anxiety. The patients were found to have had adequate access to physical pain control but poor access to psychological symptom control. Efficiency in diagnosing and treating psychological complications of terminally ill cancer patients may not only improve their quality of life but possibly also prevent long-term psychological morbidity of their surviving partners.

Dimensions of fatigue during radiotherapy. An application of the Multidimensional Fatigue Inventory.

The aim of the present study was to describe fatigue in a group of irradiated cancer patients. Fatigue was assessed prospectively in 81 Swedish cancer patients, using the Multidimensional Fatigue Inventory (MFI-20), which was also validated in the study, the Karolinska Sleepiness Scale and a Borg CR10 scale before curative radiotherapy, at the end of therapy and 1 and 3 months after treatment. The mean age of these patients was 56 years; 90% were female; and 65% were being treated for cancer of the breast. The absorbed radiation dose was 50 Gy or lower in 90% of the patients. A clear peak in experienced fatigue according to the three scales was seen at the end of treatment. In the MFI-20 the dimensions of General fatigue, Physical fatigue and Reduced activity, were more pronounced than the aspects of Mental fatigue and Reduced motivation. Comparison with other studies using the same instrument in other irradiated patients revealed a similar pattern. The internal consistency of the Swedish version of the MFI-20 was good. The MFI-20 is shown to be a valid instrument for assessing fatigue in patients undergoing radiotherapy.

Dimensions of fatigue during radiotherapy--an application of the Swedish Occupational Fatigue Inventory (SOFI) on cancer patients.

The aims of this study were primarily to evaluate the applicability of the Swedish Occupational Fatigue Inventory (SOFI) on cancer patients, secondly to describe the development of fatigue in patients, receiving full dose radiotherapy with a curative intent. A questionnaire was completed by 81 cancer patients at four occasions; before treatment. during the last week of treatment. 1 and 3 months, respectively, after treatment. The fatigue increased significantly at the end of treatment, as compared to pretreatment, and decreased after treatment. The highest fatigue ratings concerned lack of energy, lack of motivation and sleepiness. The five SOFI-dimensions explained more than half of the variance in the overall rating of fatigue, and the internal consistency of the dimensions were good. However, the ratings were on the lower part of the scale and the dimensions correlated more than expected. Thus, the relevance of the SOFI for use also among patients is only partially supported, and studies with larger samples are needed for further testing of the inventory.

Aspects of delayed chemotherapy-induced nausea. Dexamethasone and adrenal response patterns in patients and healthy volunteers.

Delayed chemotherapy-induced nausea is still a clinical problem, and the underlying mechanisms are poorly understood. Previous studies have suggested that corticosteroids are involved, although the mechanisms by which corticosteroids exert their antiemetic effect are largely unknown. We have previously found impaired control of delayed nausea after injection of dexamethasone. The possibility of differences in the recovery of the hypothalamic-pituitary-adrenal (HPA) axis after injection of dexamethasone was investigated in patients (n = 5) with gynaecological cancer being treated with platinum-based chemotherapy and in healthy female volunteers (n = 10). Urinary free cortisol was used to assess the levels of endogenous cortisol. Results showed that in both patients and controls injections of dexamethasone led to a significant decline in endogenous cortisol levels in 24 h and a subsequent significant recovery in the next 24 h. We conclude that the recovery of the HPA axis is rapid after a single dose of dexamethasone in patients and controls. The absence of an abnormal response pattern in patients makes it probable that the suppression and recovery of the HPA axis after injection of dexamethasone does not influence the corticosteroid-induced rebound effect on delayed platinum-induced nausea.

Nonimpact brain injury: neuropsychological and behavioral correlates with consideration of physiological findings.

This retrospective clinical study investigated the neuropsychological, physiological, and behavioral functioning of 32 adult outpatients up to 65 months following nonimpact brain injury (i.e., whiplash). All participants were administered a flexible battery of cognitive tests, and some underwent neurodiagnostic procedures and sleep studies. Compared with published norms, neuropsychological data revealed significant and persistent age-adjusted cognitive deficits, primarily in the area of executive functioning. Participants frequently complained of problems with behavioral control, sleep, and sexuality. Although structural neuroimaging was not sensitive in detecting brain pathology, quantitative electroencephalography was abnormal in all the participants evaluated, showing frontocentral slowing and increased spike wave activity. We propose that whiplash injury can produce wide-ranging circuitry dysfunction and that test selection is critical in identifying cognitive deficits.

[Should nutritional support and fluid therapy be used in terminal care? Guidelines for structured decision-making]. / Ska nutrition och vätska ges i livets slutskede? Riktlinjer för ett strukturerat beslutsunderlag.

A panel of experts within the European Association for Palliative Care (EAPC) have drawn up guidelines as an aid to decision making concerning nutritional support and fluid therapy in palliative cancer care. However, the issue is characterised by a lack of scientifically based indications. The article consists in discussion of the question of fluid therapy in terminal cases, in the light of the EAPC guidelines. A meticulous assessment should be made of the patient in terms of oncological and clinical status, symptomatology, prognosis, fluid and nutritional status, nutrient and fluid intake, psychological attitudes, gastro-intestinal function, and the availability of technical expertise in enteral or parenteral nutrition and fluid therapy. Case reports are used to illustrate the importance of taking these factors into consideration, and of careful weighing of the pros and cons.

Drug infusors in palliative medicine: a Swedish inquiry.

The use of drug infusors is common in palliative care. Knowledge about the drugs being used and the handling of drug mixtures in insufficient and poorly documented. To clarify this practice, a questionnaire was sent to all departments of pain/anesthesiology and oncology, and to all home-care teams and palliative care units/hospices in Sweden (N = 156). The questions concerned specific qualities of the drug infusors and the different drugs and drug mixtures used by subcutaneous (s.c.) and intravenous (i.v.) administration. A total of 110 (70%) of the questionnaires were returned. A majority of the respondents reported the use of one or more of three different infusors. Morphine was used in 73% of all single drug infusions. Dosages ranged from 30 mg/24 hr to 5000 mg/24 hr. The most common drug mixture was morphine/haloperidol (22% of all drug mixtures). As many as three drugs were used in combination. The most frequent indication to switch from oral administration to parenteral administration was gastrointestinal disorders such as swallowing difficulties, nausea, vomiting, or bowel obstruction. In Sweden, there is extensive clinical experience administering opioids in infusors, but experience varies for different drug mixtures. There are few clinical and pharmacological investigations to support this practice and further studies are needed.

Similarities and differences in assessing nausea on a verbal category scale and a visual analogue scale.

The use of verbal category scales in assessing patient symptoms is evolving, but the extent to which reliability and precision are lost in using them as opposed to a visual analogue scale (VAS) remains uncertain. The present study analyzed the concordance between a four-point verbal category scale and a VAS in assessing nausea intensity in patients undergoing chemotherapy. The analysis of a total of 348 simultaneous ratings by 104 women over four cycles revealed good concordance between the scales. The means of the VAS ratings (range 0-100 mm) corresponding to the four verbal categories divided the scale in four almost equally large parts (no nausea = 0.7, mild = 24.8, moderate = 48.3, severe = 75.1). However, the VAS ranges were wide. On an individual level a one-step change in the verbal category was associated with an average change of 20 mm on the VAS. The choice of scale to use should be based on the need in the particular situation. When measuring intensity of nausea in patients, the VAS is a reasonable choice due to its possibly greater ability to detect changes over time. On the group level, findings on a four-point category scale and a VAS on the average seem similar.