End-of-life care in amyotrophic lateral sclerosis: A comparative registry study.

BACKGROUND: Amyotrophic lateral sclerosis (ALS) is a fatal disease requiring palliative care. End-of-life care has been well studied in patients with incurable cancer, but less is known about the quality of such care for patients with ALS. AIM: To study whether the quality of end-of-life care the last week in life for patients dying from ALS differed compared to patients with cancer in terms of registered symptoms, symptom management, and communication. DESIGN: This retrospective comparative registry study used data from the Swedish Registry of Palliative Care for 2012-2016. Each patient with ALS (n = 825) was matched to 4 patients with cancer (n = 3,300). RESULTS: Between-group differences in assessments for pain and other symptoms were significant (p < 0.01), and patients with ALS had fewer as-needed injection drugs prescribed than patients with cancer. Patients with ALS also had dyspnea and anxiety significantly more often than patients with cancer. There was no significant difference in communication about transition to end-of-life care between the two groups. Patients dying from ALS received artificial nutrition on their last day of life significantly more often than patients with cancer. CONCLUSIONS: The results indicate that patients with ALS receive poorer end-of-life care than patients dying from cancer in terms of validated symptom assessments, prescription of as-needed drugs, and timely cessation of artificial nutrition. Educational efforts seem needed to facilitate equal care of dying patients, regardless of diagnosis.

Socioeconomy as a prognostic factor for location of death in Swedish palliative cancer patients.

BACKGROUND: An important aspect of end-of-life care is the place of death. A majority of cancer patients prefer home death to hospital death. At the same time, the actual location of death is often against patient's last-known wish. The aim of this study was to analyze whether socioeconomic factors influence if Swedish palliative cancer patients die at home or at a hospital. There is no previous study on location of death encompassing several years in Swedish cancer patients. METHODS: Data was collected from the Swedish Register of Palliative Care for patients diagnosed with brain tumor, lung, colorectal, prostate or breast cancer recorded between 2011 and 2014. The data was linked to the Swedish Cancer Register, the Cause of Death Register and the Longitudinal Integration Database for health-insurance and labor-market studies. A total of 8990 patients were included. RESULTS: We found that marital status was the factor that seemed to affect the place of death. Lack of a partner, compared to being married, was associated with a higher likelihood of dying at a hospital. CONCLUSION: Our findings are in line with similar earlier studies encompassing only 1 year and based on patients in other countries. Whether inequalities at least partly explain the differences remains to be investigated. Patients dying of cancer in Sweden, who do not have a life partner, may not have the option of dying at home due to lack of informal support. Perhaps the need of extensive community support services to enable home death have to improve, and further studies are warranted to answer this question.

Physicians working in oncology identified challenges and factors that facilitated communication with families when children could not be cured.

AIM: We explored physicians' experiences of communicating with families when their child had cancer and a cure was no longer an option, by focusing on barriers and facilitating factors. METHODS: Physicians from the six cancer centres in Sweden took part in focus group discussions between December 2017 and May 2018, and the data were analysed using qualitative content analysis. Focus groups enabled us to gather individual and shared perspectives. RESULTS: The 35 physicians (20 male) had a mean age of 47 (range 31-74) and a mean of 11 years' experience in oncology, ranging from under one year to 43 years. They reported communication challenges when a cure was not possible, namely: emotional and mental drain, lack of mutual understanding and uncertainty about communication skills. They also reported facilitating factors: flexibility in complex conversations, the child's position in the conversations, continuity and trusting relationships, support from colleagues and having discussed the potentially life-threatening nature of cancer from the very start of treatment. CONCLUSION: Training to overcome communication issues could support the early integration of palliative care.

The effect of bereavement groups on grief, anxiety, and depression - a controlled, prospective intervention study.

BACKGROUND: Bereavement groups are believed to be beneficial as preventive interventions to reduce the development of complicated grief for people at risk after the death of a significant other. This study aimed to investigate whether measurable effects on grief, anxiety, and depression could be detected in those participating in bereavement groups compared to non-participating controls. METHODS: Questionnaires covering the Texas Revised Inventory of Grief (TRIG), the Hospital Anxiety and Depression Scale (HADS), and background questions were handed out pre-intervention, five weeks and one year post-intervention to bereaved caregivers invited to bereavement groups. The results were analysed with non-parametric methods. RESULTS: A total of 124 individuals answered the questionnaires, and were divided into three categories: participants, non-participants unable to participate, and non-participants not wanting to participate in bereavement groups. At the one-year follow up, participants and those unable to participate reported higher levels of grief and were more anxious than those not wanting to participate. Depression did not differ between the groups. CONCLUSIONS: Participation in bereavement groups did not produce any effects on grief, anxiety, or depression in comparison to non-participants who were unable to participate. Non-participants who did not want to participate reported lower levels of grief and anxiety than the other two groups.

Patients' perspectives on information from physicians during palliative chemotherapy: A qualitative study.

OBJECTIVE: During the course of their disease, patients with cancer receiving palliative chemotherapy receive extensive amounts of information from physicians. The objective of our study was to describe patients' perspectives on the information they received from physicians during palliative chemotherapy with regard to their cancer diagnosis, treatments, prognosis, and future planning. METHOD: A total of 15 semistructured face-to-face interviews with patients who had incurable cancer were conducted, transcribed verbatim, and analyzed with qualitative content analysis. RESULTS: Three categories were defined during the analytical process: "having a chronic disease," "depending on chemotherapy," and "living with an unpredictable future." SIGNIFICANCE OF RESULTS: Our study demonstrated that patients undergoing palliative chemotherapy perceived that their disease was incurable and chronic, that they were dependent on chemotherapy, and that their future was uncertain. Compared with other studies, the patients in our study seemed to be more aware of their prognosis and the goals of care.

A study of patients not registered in the Swedish Cancer Register but reported to the Swedish Register of Palliative Care 2009 as deceased due to cancer.

BACKGROUND: The Swedish Cancer Register (SCR), an old and reputable health data register, contributes a large amount of data used in research. The quality of the research using SCR data depends on the completeness and validity of the register. In Sweden, every healthcare provider is obligated to report newly detected cases of cancer to the SCR regardless of the diagnostic basis. This study aimed to clarify whether there is an under-reporting of patients with cancer to the SCR or an over-reporting of cancer as cause of death to the SRPC as all patients do not appear in both registers. In addition, this study looked at the distribution of under-reporting or over-reporting related to age, sex, type of cancer, diagnostic basis, and department responsible for cancer diagnosis. MATERIAL AND METHODS: Of the 10 559 patients whose cause of death was cancer as reported to the SRPC (2009), 1394 patients (13.2%) were not registered in the SCR (1958-2009). Medical records from a representative sample of 203 patients were collected and reviewed. RESULTS: The medical records for 193 patients were obtained; of those, 183 (95%) patients should have been reported to the SCR. Among these, radiologic investigation was the most common basis for diagnosis and there was a significant over-representation of cancer of the pancreas, lung, liver, and bile ducts. DISCUSSION: This study cannot quantify the completeness of the SCR. The findings indicate that 12.5% of patients dying of cancer in palliative care are not reported, that specialized hospital departments diagnose the vast majority of the unreported patients, and that routines for how to report patients to the SCR based on radiological findings should be revised.

Avoiding harmful palliative chemotherapy treatment in the end of life: development of a brief patient-completed questionnaire for routine assessment of performance status.

BACKGROUND: Earlier studies have shown that up to 43% of patients with incurable cancer are treated with palliative chemotherapy in the last month of their lives. Although pretreatment blood tests are acceptable, the patient's general condition may not permit further palliative chemotherapy treatment (PCT). Presently, there is no patient self-assessment tool available to monitor performance status during PCT. OBJECTIVES: To describe the development process of the Performance Status in Palliative Chemotherapy (PSPC) questionnaire, and the testing of its psychometric properties. METHODS: The questionnaire was developed by the authors based on the Eastern Cooperative Oncology Group Performance Status Rating (ECOG PSR) scale as well as their clinical experience with PCT. Adult patients who were diagnosed with epithelial cancers (n = 118) were enrolled to test the PSPC questionnaire for reliability, sensitivity for change, and validity. RESULTS: After stepwise modifications of the PSPC questionnaire, psychometric tests revealed acceptable values for reliability (via a test-retest method), sensitivity for change (via a comparison of patients with progressive disease over time), and validity (via a comparison of the PSPC vs the Edmonton Symptom Assessment System [ESAS]). LIMITATIONS: At this stage of questionnaire development, we are unable to conclude whether the PSPC is superior to the conventional ECOG PSR in the evaluation of performance status and the prediction of chemotherapy response. CONCLUSION: Psychometric tests suggest that the PSPC questionnaire may be a useful patient-completed tool in the late stages of cancer disease to routinely monitor performance status in palliative chemotherapy treatments so as to minimize the risk of inflicting more harm than good.

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

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.

The Challenge: Equal Availability to Palliative Care According to Individual Need Regardless of Age, Diagnosis, Geographical Location, and Care Level.

The European Council, the World Health Organization, the International Association of Hospice and Palliative Care, and various other national guidelines emphasize equal provision of palliative care. To fulfill this vision, all involved need to be aware of the existing situation even in western European countries. Data from the European Atlas of Palliative Care and the Swedish Registry of Palliative Care are used to illustrate the present inequalities. The data illustrate the unequal provision of palliative care relating to level of care, place of residence, diagnoses, and age. The challenge of providing equal palliative care remains, even in Western European countries, in spite of all positive developments. Different approaches that may contribute to successful implementation of equal palliative care are discussed. The challenge is still there and will require some effort to resolve.

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

UNLABELLED: 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.

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.

PURPOSE: The 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. METHODS: A 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. RESULTS: Five 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. CONCLUSIONS: This study provided some evidence for the validity of the AQEL and its feasibility in patients with cancer in palliative care.

[Redefining palliative care- focusing serious suffering of severe illness]. / Ny definition av palliativ vård med fokus på lidande.

Palliative care was initially developed for patients with a cancer diagnosis and severe symptoms. Despite the ambition to broaden the palliative care approach to include other groups, patients with cancer are still a majority in specialised palliative care. The broader view and development of palliative care has led to an intense debate on existing definitions. Following a request from The Lancet Commission on global palliative care, the International Association of Hospice and Palliative Care (IAHPC) has presented a new definition. The proposal was developed in several stages, in collaboration with specialists in palliative care from a total of 88 countries. The IAHPC's definition differs from the WHO's definition in several aspects. Most importantly, the IAHPC's definition takes a reversed perspective and instead of focusing on life-threatening illness as motivating palliative care, the new proposal focuses on serious suffering of a person with severe illness.

Geographical Differences in Likelihood of Home Death Among Palliative Cancer Patients: A National Population-based Register Study.

BACKGROUND/AIM: Previous studies have shown discrepancies between patient's desired and actual death place. As planning of family support and involvement of palliative home care teams seem to improve the chance to meet patients preferences, geographical availability of specialized palliative home care could influence place of death. PATIENTS AND METHODS: Data of patients diagnosed and deceased between January 2011 until December 2014 with lung, brain, colorectal, breast and prostate cancer was collected from Swedish national registers and multiple regression analyses were performed. RESULTS: Patients with lung, brain, colorectal, and prostate cancer who resided in rural municipalities had a higher likelihood of dying at home than dying in hospital settings, compared to those who lived in urban areas. CONCLUSION: Patients in Sweden, with the exception of breast cancer patients, have a higher likelihood of home death than inpatient hospital death when residing in rural areas compared to when residing in urban areas.

Analgesic effect of paracetamol on cancer related pain in concurrent strong opioid therapy. A prospective clinical 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 (NRSB4), 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.

The meaning of quality of life: narrations by patients with incurable cancer in palliative home care.

OBJECTIVE: The objective of this qualitative study was to elucidate the meaning of quality of life as narrated by patients with incurable cancer approaching death in palliative home care in Sweden. METHODS: To gain a deeper understanding of what quality of life means for dying patients, data were collected from narrative interviews with eight patients in their homes in 2004-2006. Qualitative content analysis was used to interpret the meaning regarding quality of life. RESULTS: Three main themes were found: being in intense suffering, having breathing space in suffering, and being at home. Living with incurable cancer at the end of life was experienced as living in physical distress as the body became incapacitated by unexpected physical complications. This incapacity had consequences on patients' psychological, social, and existential well-being. As the complication phase abated, the patients experienced that they regained hopefulness and had time to reflect on existential issues. Patients were provided affirmative care at home from family caregivers and the palliative home care team. SIGNIFICANCE OF RESULTS: This study shows that it is feasible to perform individual interviews with patients approaching death and elucidate the meaning of patients' quality of life in palliative home care. Patients oscillate between being in intense suffering and having breathing space in this suffering, which somewhat opposes the traditional picture of a continuous linear deterioration. Being cared for at home by family caregivers and health care professionals provided a sense of independency and security. Being at home safeguards patients' entire life situation and increases quality of life.

The prevalence of deranged C-reactive protein and albumin in patients with incurable cancer approaching death.

INTRODUCTION: Amongst patients with incurable cancer approaching death, cachexia is common and associated with adverse outcomes. The term cachexia lacks a universally accepted definition and there is no consensus regarding which variables are to be measured. Furthermore, an elevated C-reactive protein is a common clinical challenge in this patient group. This study aims to add to the ongoing discussion regarding the definition of cancer cachexia and to study the role of C-reactive protein and s-albumin in this context. MATERIAL AND METHODS: A 1-year cohort, consisting of 155 cancer patients enrolled in a specialized palliative home care team in the city of Östersund, Sweden, that were deceased during the year of 2015 was studied. Laboratory measures were studied within 0-30 and 31-60 days prior to death. C-reactive protein >10 mg/L and coinciding s-albumin <30 g/L was referred to as "laboratory cachexia". Also, the number of days from the first found "laboratory cachexia" until death was noted. RESULTS: The prevalence of "laboratory cachexia" was 85% 0-30 days prior to death compared to 66% 31-60 days prior to death (p<0.01). The majority of patients (75%) had an onset of "laboratory cachexia" within 0-120 days prior to death, with a median of 47 days. The median values for C-reactive protein and s-albumin within 0-30 days prior to death were 84mg/L and 23g/L respectively. DISCUSSION: Could markedly deranged values of C-reactive protein and s-albumin, such as found in this study, signal a relatively short remaining survival time in patients with incurable cancer and no clinical signs of ongoing infection? The role of "laboratory cachexia" in this context as well as the cut off values for the laboratory measures included may be further discussed.

Improved data validity in the Swedish Register of Palliative Care.

INTRODUCTION: 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. MATERIALS AND METHODS: 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. RESULTS: 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. CONCLUSION: 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.

Routine assessment of performance status during palliative chemotherapy when approaching end-of-life.

PURPOSE: Palliative chemotherapy treatment (PCT) offered late in the cancer disease trajectory may be problematic. It is not easy to accurately calculate whether the potential benefits will outweigh the side-effects. This study investigates whether routine use of the Performance Status in Palliative Chemotherapy questionnaire (PSPC) affects the proportions of patients receiving PCT during the last month of life, care utilization, and documentation routines. A secondary aim was to gather registered nurses' experiences of the PSPC in routine use. METHODS: Eighty incurable patients with cancer who had used the PSPC before PCT were compared to 160 matched controls, using non-parametric tests. Nurses' reflections on the PSPC were collected and reviewed. RESULTS: No significant differences were found between users and non-users of the PSPC in terms of proportions receiving PCT during the last month of life. Higher proportions of patients older than 74 years received PCT than in previous studies (40% versus 17%). Nurses considered the questionnaires to be a valuable complement to verbal information when trying to acquire an accurate picture of patients' performance status. CONCLUSION: At this point in the development of the PSPC we did not find any significant decreases in the proportion of patients receiving PCT during the last month in life. However, as the nurses valued the PSPC, it can be used as a complementary tool in assessment of performance status until further research is conducted.

[Place of residence determines the palliative care resources and quality. Efforts to increase the competence are needed]. / Bostadsort avgör den palliativa vårdens resurser och kvalitet - Satsningar för att öka kompetensen behövs.

Access to palliative care is unequally distributed across Sweden and thus does not meet the needs. The holistic perspective of palliative care is sometimes contrasted with the usual medical focus on organ failure and disease. Palliative consultation teams provide specialist palliative care competencies for staff caring for patients in primary care, nursing homes and in hospitals. Efforts to increase knowledge and skills in palliative care is needed at undergraduate university level and through postgraduate and specialist training. Well organized cooperation between municipalities, county councils and primary care is crucial for patients in the final stages of life.