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Background: Patients with incurable cancer face complex medical decisions. Their family caregivers play a prominent role in shared decision making processes, but we lack insights into their experiences. In this study, we explored how bereaved family caregivers experienced the shared decision making process. Methods: We performed a qualitative interview study with in-depth interviews analysed with inductive content analysis. We used a purposive sample of bereaved family caregivers (n = 16) of patients with cancer treated in a tertiary university hospital in the Netherlands. Results: Four themes were identified: 1. scenarios of decision making, 2. future death of the patient 3. factors influencing choices when making a treatment decision, and 4. preconditions for the decision making process. Most family caregivers deferred decisions to the patient or physician. Talking about the patient's future death was not preferred by all family caregivers. All family caregivers reported life prolongation as a significant motivator for treatment, while the quality of life was rarely mentioned. A respectful relationship, close involvement, and open communication with healthcare professionals in the palliative setting were valued by many interviewees. Family caregivers' experiences and needs seemed to be overlooked during medical encounters. Conclusions: Family caregivers of deceased patients with cancer mentioned life prolongation, and not quality of life, as the most important treatment aim. They highly valued interactions with the medical oncologist and being involved in the conversations. We advise medical oncologists to take more effort to involve the family caregiver, and more explicitly address quality of life in the consultations. [ABSTRACT FROM AUTHOR]

Background Many patients with cancer suffer from pain, which is often not optimally treated. In 2008, the evidence-based, multidisciplinary Dutch guideline on the diagnosis and treatment of pain in this patient group was published. We assessed knowledge about and adherence to the guideline by pain specialists. Methods A cross-sectional case vignette survey describing a palliative patient with intractable pancreatic cancer and pain was sent to all 350 Dutch anesthesiologists registered as pain specialists at the Netherlands Association of Anesthesiology. Descriptive statistics were conducted. Results Ninety-three pain specialists completed the questionnaire (27%). The majority appeared to follow the guideline recommendations on pharmacological (99%) and invasive treatment (95%) in the diverse stages of the disease. However, the recommendation to use a one-dimensional pain scale to evaluate the effect of pain treatment and the recommendation to perform a multidimensional pain assessment if the patient in pain is in a deteriorating stage were only followed by a minority of the respondents (23% and 15%, respectively). Conclusions Regarding most recommendations, Dutch pain specialists know and intend to follow the national multidisciplinary cancer pain guideline. Yet, only a minority of them perform structural pain assessment of the patient with cancer pain. However, as the response rate was low (27%), the results should be interpreted with caution and cannot be generalized to the entire population of pain specialists in the Netherlands. We recommend that, in the guideline update and implementation programs, more attention be given to thorough assessment of the patient with pain and cancer. [ABSTRACT FROM AUTHOR]

Background Systematic pain registration and assessment with a visual analog scale ( VAS) or numeric rating scale ( NRS) at each visit are key recommendations in one of the most recent guidelines on cancer pain management. It is unclear whether this recommendation is applied. Objectives The aim was to explore registration of pain in medical records of patients visiting the medical oncology outpatient clinic. Methods In a multicenter study in six Dutch hospitals, data were extracted from medical records of 380 outpatients with cancer. Data of the first three visits at the outpatient clinic were studied. Descriptive statistics were conducted. Results In 23% of all 987 visits at the outpatient clinic, pain or absence of pain was registered, and in an additional 15%, a nonspecific symptom description was given. Regarding all other visits, (62%) pain or absence of pain was not documented at all. Pain measurement using a VAS or NRS was documented in only one visit. Pain was more often registered in medical records of patients with metastasis, as well as in those of patients with urogenital tumors. Conclusion Pain in medical oncology outpatients is not systematically registered in their medical records. With one exception, pain was not registered with a VAS or NRS. Yet, registration and assessment of pain to monitor pain are essential to evaluate and adapt pain treatment over time. Pain registration has not improved since 2001 and therefore implementing the recommendations regarding systematic monitoring of pain is needed. [ABSTRACT FROM AUTHOR]

Background There is a wide gap between knowledge about palliative care and its application in everyday clinical practice, affecting many patients in our ageing population. However, changing health care practice is a complex and challenging process. Therefore, the EU funded IMplementation of quality indicators in PAlliative Care sTudy (IMPACT) project aims to develop optimal implementation strategies to improve the organization of palliative care for people with cancer or with dementia in Europe. Methods and design The organization of palliative care in Europe will be mapped to develop and prepare strategies to improve it, and an overview of barriers and incentives regarding successful organizational changes in palliative care will be undertaken. A pre-test with a set of quality indicators (QIs), developed within the project, will be used to identify aspects of the organization of palliative care requiring change in hospitals, nursing homes, hospices, and primary care in five European countries. Based on the results of the pre-test, each setting will be invited to prioritise and improve aspects of their organization that appeared weak. The improvement objective they choose will be tailored to national and setting-specific barriers. Finally, a post-test with the same QIs will determine the effectiveness of the strategies used. An extensive process analysis will be conducted throughout the entire study. Discussion It is expected that the IMPACT project will provide professionals and policy makers useful tools to facilitate effective implementation of high-quality palliative cancer and dementia care in different settings in Europe. [ABSTRACT FROM AUTHOR]