Patients with advanced cancer are influenced by the disease itself and by treatment side effects, both of which may have great impact on their lives. One of the most distressing symptoms is pain. However, pain in cancer patients can in most cases be relieved if the patient is able to communicate the nature and severity of the problem to the healthcare professionals through an effective assessment process. The main goal of this paper is to help form an understanding of central patient characteristics that should be taken into account when designing pain assessment tools for patients with advanced cancer. Traditionally, pain has been assessed by paper-based questionnaires and pain drawings. An iterative study was conducted based on repeated cycles of usability testing of a computerized pain body map for communicating pain by advanced cancer patients. Our aim was to provide a patient interface that most patients were able to interact with, collecting valuable, granular pain information with a minimum of strain on the patient. Through this process, we identified and solved design issues related to the sickest and frailest cancer patients. We further created a web-based solution for collecting individual pain drawings for evaluation by clinicians. The concept was appreciated by the patients, and the information provided was considered valuable by physicians. The main contribution of this paper is a list of suggestions to guide the design of an interactive tool for patients with advanced cancer.
Background: The ERANet-LAC CODE (Care Of the Dying Evaluation) international survey assessed quality of care for dying cancer patients in seven countries, by use of the i-CODE questionnaire completed by bereaved relatives. The aim of this sub study was to explore which factors improve or reduce quality of end-of-life (EOL) care from Norwegian relatives' point of view, as expressed in free text comments. Methods: 194 relatives of cancer patients dying in seven Norwegian hospitals completed the i-CODE questionnaire 6-8 weeks after bereavement; recruitment period 14 months; response rate 58%. Responders were similar to nonresponders in terms of demographic details.104 participants (58% spouse/partner) added free text comments, which were analyzed by systematic text condensation. Results: Of the 104 comments, 45% contained negative descriptions, 27% positive and 23% mixed. 78% described previous experiences, whereas 22% alluded to the last 2 days of life. 64% of the comments represented medical/ surgical/oncological wards and 36% palliative care units. Four main categories were developed from the free text comments: 1) Participants described how attentive care towards the practical needs of patients and relatives promoted dignity at the end of life, which could easily be lost when this awareness was missing. 2) They experienced that lack of staff, care continuity, professional competence or healthcare service coordination caused uncertainty and poor symptom alleviation. 3) Inadequate information to patient and family members generated unpredictable and distressing final illness trajectories. 4) Availability and professional support from healthcare providers created safety and enhanced coping in a difficult situation.
Background: Narrative medicine emphasizes how stories can increase the understanding of patients' experiences and give important insights into how patients interpret and strive to make meaning in the situation they find themselves in.Aim: The aim of this study was to gain insight into the illness narratives of cancer patients, from the day they suspected that something was wrong until living with incurable cancer. Methods and results: Six men and seven women, aged 47 to 79 years, diagnosed with metastatic cancer and undergoing chemotherapy with life-prolonging intent in an oncology outpatient clinic, were asked to tell their illness stories as freely as possible, without guiding questions. Stories were tape recorded, transcribed, and analyzed by a thematic narrative analysis. Encounters with doctors through the disease trajectory were highlighted by all narrators. Several informants described poor communication and consequences in the form of "doctors delay" and substandard psychosocial care. Continuity in follow-up and the physician's ability or inability to break bad news and adapt information to the patient's wishes and preferences were particularly emphasized. Conclusion: A key finding was the importance of the doctor's role throughout the whole trajectory. A good doctor-patient relationship was characterized by continuity of care in follow-up, and trust acquired over time, based on the physician's thorough medical knowledge combined with sensitive communication and empathy. K E Y W O R D S cancer patients, communication, continuity of care, doctor-patient relationship, doctor's delay, illness narratives 1 | INTRODUCTION The last decades have seen an increasing research interest in patients' experiences of living with a cancer disease. 1-3 Doctor-patient communication has also been a central research topic for many years, and many different communication models are recommended, such as the SPIKES model 4,5 and the Four Habits model. 6 Another model is the Turner Social Drama Model. 7 This model emphasizes people's perspectives, values, needs, and experiences contextualized in an illness process. The model pays close attention to people's journeys and how these may dynamically change over time. By taking both biographical and clinical aspects of people's journeys into account, this model could be an alternative to clinical pathway models, with a sharper focus on humanizing care. 7,8 Good doctor-patient communication is
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