RESUMO
OBJECTIVE: A late conversation about palliative care needs can lead to suboptimal care in the final months/weeks of life. Insight into factors related to patients' communication about palliative care is needed. This study aims to identify the factors associated with starting/intending to start a conversation about palliative care with the physician. METHODS: We performed a cross-sectional interviewer-administered survey among people with incurable cancer. Purposive sampling was used, taking into account theoretically relevant heterogeneity. The questionnaire was developed based on the theory of planned behavior. Uni- and multivariable logistic regression analyses were performed. RESULTS: Out of 80 participants, ten (13%) started the palliative care conversation and 18 (23%) intended to do so. People holding a positive attitude towards starting/intending to start the conversation (odds ratio [OR] 4.74; 95% CI 2.35-9.54), perceiving more benefits of it (OR 2.60; 95% CI 1.37-4.96) and perceiving a positive attitude towards the behavior in family/friends (OR 2.07; 95% CI 1.26-3.41) and the physician (OR 2.19; 95% CI 1.39-3.45) were more likely to start/intend to start a palliative care conversation; people perceiving more disadvantages (OR 0.53; 95% CI 0.32-0.87) and barriers (OR 0.31; 95% CI 0.15-0.63) were less likely to do so. These factors explained 64% of the variance. CONCLUSIONS: Our findings show that psychological and perceived socio-environmental factors, particularly patients' attitudes, are associated with starting a conversation about palliative care. Theory-based interventions targeting these strong associations might have a high potential to empower people with cancer to take the initiative in communication about palliative care and to improve timely initiation of palliative care.
Assuntos
Neoplasias , Cuidados Paliativos , Humanos , Cuidados Paliativos/psicologia , Estudos Transversais , Qualidade de Vida/psicologia , Inquéritos e Questionários , Neoplasias/terapia , Neoplasias/psicologia , ComunicaçãoRESUMO
PURPOSE: This study evaluated the effect of early integrated palliative care (PC) in oncology on quality of life (QOL) near the end of life and use of health care resources near the end of life. METHOD: Patients with advanced cancer and a life expectancy of approximately 1 year were randomly assigned to either early and systematic integration of PC into oncological care (intervention) or standard oncological care alone (control). QOL was assessed with the EORTC QLQ-C30 global health status/QOL scale and McGill Quality of Life (MQOL) Single Item Scale and Summary Scale at baseline, 12 weeks and 6 weekly thereafter until death. Use of health care resources was collected from chart review in patient's electronic medical file for patients who died while participating in the study. RESULTS: Of the 186 randomised patients, 185 participants had a baseline measurement and were analysed. By November 2017, 128 patients had died while participating in the study. When applying the terminal decline model, patients in the intervention group scored significantly higher on global health status/QOL of the EORTC QLQ C30, at 6 months (difference: 5.9 [0.06; 11.1], p = 0.03), 3 (difference: 6.8 [1.0; 12.6], p = 0.02), and 1 month (difference: 7.6 [0.7; 14.5], p = 0.03) prior to the patient's death compared to the control group. Similar results were found for the Single Item Scale and Summary Score of the MQOL. We did not observe differences in use of health care resources between groups. DISCUSSION: Early integrated palliative care in oncology is a valuable approach since it also increases QOL near the end of life and not only soon after initiation of PC.
Assuntos
Cuidados Paliativos/métodos , Qualidade de Vida/psicologia , Assistência Terminal/métodos , Feminino , Humanos , Masculino , Pessoa de Meia-IdadeRESUMO
BACKGROUND: The benefit of early integration of palliative care into oncological care is suggested to be due to increased psychosocial support. In Belgium, psychosocial care is part of standard oncological care. The aim of this randomised controlled trial is to examine whether early and systematic integration of palliative care alongside standard psychosocial oncological care provides added benefit compared with usual care. METHODS: In this randomised controlled trial, eligible patients were 18 years or older, and had advanced cancer due to a solid tumour, an European Cooperative Oncology Group performance status of 0-2, an estimated life expectancy of 12 months, and were within the first 12 weeks of a new primary tumour or had a diagnosis of progression. Patients were randomly assigned (1:1), by block design using a computer-generated sequence, either to early and systematic integration of palliative care into oncological care, or standard oncological care alone in a setting where all patients are offered multidisciplinary oncology care by medical specialists, psychologists, social workers, dieticians, and specialist nurses. The primary endpoint was change in global health status/quality of life scale assessed by the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 items (EORTC QLQ C30) at 12 weeks. The McGill Quality of Life Questionnaire (MQOL), which includes the additional existential wellbeing dimension, was also used. Analysis was by intention to treat. This trial is ongoing, but closed for accrual, and is registered with ClinicalTrials.gov, number NCT01865396. FINDINGS: From April 29, 2013, to Feb 29, 2016, we screened 468 patients for eligibility, of whom 186 were enrolled and randomly assigned to the early and systematic palliative care group (92 patients) or the standard oncological care group (94). Compliance at 12 weeks was 71% (65 patients) in the intervention group versus 72% (68) in the control group. The overall quality of life score at 12 weeks, by the EORTC QLQ C30, was 54·39 (95% CI 49·23-59·56) in the standard oncological care group versus 61·98 (57·02-66·95) in the early and systematic palliative care group (difference 7·60 [95% CI 0·59-14·60]; p=0·03); and by the MQOL Single Item Scale, 5·94 (95% CI 5·50-6·39) in the standard oncological care group versus 7·05 (6·59-7·50) in the early and systematic palliative care group (difference 1·11 [95% CI 0·49-1·73]; p=0.0006). INTERPRETATION: The findings of this study show that a model of early and systematic integration of palliative care in oncological care increases the quality of life of patients with advanced cancer. Our findings also show that early and systematic integration of palliative care is more beneficial for patients with advanced cancer than palliative care consultations offered on demand, even when psychosocial support has already been offered. Through integration of care, oncologists and specialised palliative care teams should work together to enhance the quality of life of patients with advanced cancer. FUNDING: Research Foundation Flanders, Flemish Cancer Society (Kom Op Tegen Kanker).
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Prestação Integrada de Cuidados de Saúde/organização & administração , Expectativa de Vida , Oncologia/organização & administração , Neoplasias/terapia , Cuidados Paliativos/organização & administração , Equipe de Assistência ao Paciente/organização & administração , Idoso , Bélgica , Comportamento Cooperativo , Feminino , Nível de Saúde , Humanos , Comunicação Interdisciplinar , Masculino , Pessoa de Meia-Idade , Neoplasias/mortalidade , Neoplasias/patologia , Neoplasias/psicologia , Qualidade de Vida , Fatores de Tempo , Resultado do TratamentoRESUMO
BACKGROUND: Information on medication use in the last months of life is limited. AIM: To describe which medications are prescribed and deprescribed in advanced cancer patients receiving palliative care in relation to time before death and to explore associations with demographic variables. DESIGN: Prospective study, using case report forms for monthly data collection. Medication included cancer treatment and 19 therapeutic groups, grouped into four categories for: (1) cancer therapy, (2) specific cancer-related symptom relief, (3) other symptom relief and (4) long-term prevention. Data were analysed retrospectively using death as the index date. We compared medication use at 5, 4, 3, 2 and 1 month(s) before death by constructing five cross-sectional subsamples with medication use during that month. Paired analyses were done on a subsample of patients with at least two assessments before death. SETTING/PARTICIPANTS: We studied the medication use of 720 patients (mean age 67, 56% male) in 30 cancer centres representing 12 countries. RESULTS: From 5 to 1 month(s) before death, cancer therapy decreased (55%-24%), most medications for symptom relief increased, for example, opioids (62%-81%) and sedatives (35%-46%), but medication for long-term prevention decreased (38%-27%). The prevalence of chemotherapy was 15.5% in the last month of life, with 9% of new courses started in the last 2 months. With higher age, chemotherapy and opioid use decreased. CONCLUSION: Medications for symptom relief increased in almost all medication groups. Deprescribing was found in heart medication/anti-hypertensives and cancer therapy, although use of the latter remained relatively high.
Assuntos
Substituição de Medicamentos , Internacionalidade , Neoplasias/tratamento farmacológico , Neoplasias/patologia , Cuidados Paliativos , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estudos ProspectivosRESUMO
BACKGROUND: Previous studies in the US and Canada, have shown the positive impact of early palliative care programs for advanced cancer patients on quality of life (QoL) and even survival time. There has been a lack of similar research in Europe. In order to generalize the findings from the US and Canada research on a larger scale, similar studies are needed in different countries with different care settings. The aim of this paper is to describe the research protocol of a randomized controlled trial, situated in Flanders, Belgium, evaluating the effect of systematic early integration of palliative care in standard oncology care. METHODS/DESIGN: A randomized controlled trial will be conducted as follows: 182 patients with advanced cancer will be recruited from the departments of Medical Oncology, Digestive Oncology and Thoracic Oncology of the Ghent University Hospital. The trial will randomize patients to either systematic early integration of palliative care in standard oncology care or standard oncology care alone. Patients and informal caregivers will be asked to fill out questionnaires on QoL, mood, illness understanding and satisfaction with care at baseline, 12 weeks and every six weeks thereafter. Other outcome measures are end-of-life care decisions and overall survival time. DISCUSSION: This trial will be the first randomized controlled trial in the Belgian health care setting to evaluate the effect of systematic early integration of palliative care for advanced cancer patients. The results will enable us to evaluate whether systematic early integration of palliative care has positive effects on QoL, mood and patient illness-understanding and which components of the intervention contribute to these effects. TRIAL REGISTRATION: Clinicaltrials.gov Identifier: NCT01865396 , registered 24(th) of May, 2013.
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Neoplasias/terapia , Cuidados Paliativos/organização & administração , Doente Terminal , Cuidado Transicional/organização & administração , Adaptação Psicológica , Adulto , Idoso , Bélgica/epidemiologia , Cuidadores , Protocolos Clínicos , Feminino , Hospitais , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/mortalidade , Neoplasias/psicologia , Cuidados Paliativos/métodos , Satisfação do Paciente/estatística & dados numéricos , Qualidade de Vida , Encaminhamento e Consulta , Apoio Social , Inquéritos e QuestionáriosRESUMO
Continuous sedation at the end of life is a practice that has attracted a great deal of attention. An increasing number of guidelines on the proposed correct performance of the practice have been drafted. All of the guidelines stress the importance of using sedation in proportion to the severity of the patient's symptoms, thus to reduce the patient's consciousness no more than is absolutely necessary. As different patients can have different experiences of suffering, the amount of suffering should, ideally, be assessed subjectively; that is, via communication with the patient. Continuously sedated patients are often unable to communicate, however, making subjective methods of pain assessment unusable. For these patients, the degree of consciousness is the sole available measure. It therefore seems important to adequately measure how deeply the patient is sedated, thereby allowing sedation to be increased when it is too light and decreased when it is too heavy. This is in accordance with the idea that reducing consciousness is not an ethically neutral act. Although consciousness measuring techniques are a hot topic in anesthesiology, almost no research exists on the use of such techniques in the context of continuous sedation at the end of life. This article aims to review existing techniques to measure consciousness and to evaluate their applicability, efficiency, and invasiveness for patients who are continuously sedated until death. Techniques commonly used to assess the depth of sedation in continuously sedated patients are basic clinical assessment and sedation scales, as they are often considered reliable and non-invasive. These techniques might not be very reliable, however, since it is known that some patients are nonresponsive and yet aware. Moreover, sedation scales require stimulation of the patient (for example prodding, shaking, or providing painful stimuli), and can thus be considered invasive of one's bodily integrity or dignity. Other techniques, such as EEG (electroencephalography) derivatives, may score better on reliability and invasiveness. Yet these have so far never been compared to sedation scale scores for patients receiving continuous sedation at the end of life. Therefore, we conclude that, for both clinical and ethical reasons, research into the efficiency and applicability of other techniques, such as derivatives of EEG, are urgently needed.
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Sedação Consciente , Estado de Consciência , Sedação Profunda , Eletroencefalografia , Manejo da Dor , Estresse Psicológico/terapia , Ética Clínica , Ética Médica , Humanos , Pessoalidade , Reprodutibilidade dos Testes , Assistência Terminal/ética , Assistência Terminal/métodos , Assistência Terminal/normasRESUMO
A 54-year-old female with chronic failed back surgery syndrome and pain in the back and the right leg was treated by chronic spinal morphine administration by an external pump. After a positive test instillation over a 3-week period the spinal catheter was removed. Within 24 h the patient developed fever, leucocytosis, impaired sense of smell and allodynia and hyperpathia in all 4 limbs. Infection was excluded as a possible cause and a withdrawal after a second test period some weeks later reinitiated the symptoms. The symptoms vanished after restarting the morphine administration. Finally, an internal Medtronic pump was implanted because the patient obtained good pain relief with the test instillation. Good pain relief could be obtained with the daily instillation of 5 mg morphine intrathecally. Fever, leucocytosis, impaired sense of smell, allodynia and hyperpathia in the limbs reappeared a few weeks later. Evaluation showed catheter migration out of the spinal canal.