Between a rock and a hard place: Registered nurses' accounts of their work situation in cancer care in Swedish acute care hospitals.

PURPOSE: Hospital organizational features related to registered nurses' (RNs') practice environment are often studied using quantitative measures. These are however unable to capture nuances of experiences of the practice environment from the perspective of individual RNs. The aim of this study is therefore to investigate individual RNs' experiences of their work situation in cancer care in Swedish acute care hospitals. METHODS: This study is based on a qualitative framework analysis of data derived from an open-ended question by 200 RNs working in specialized or general cancer care hospital units, who responded to the Swedish RN4CAST survey on nurse work environment. Antonovsky's salutogenic concepts "meaningfulness", "comprehensibility", and "manageability" were applied post-analysis to support interpretation of results. RESULTS: RNs describe a tension between expectations to uphold safe, high quality care, and working in an environment where they are unable to influence conditions for care delivery. A lacking sense of agency, on individual and collective levels, points to organizational factors impeding RNs' use of their competence in clinical decision-making and in governing practice within their professional scope. CONCLUSIONS: RNs in this study appear to experience work situations which, while often described as meaningful, generally appear neither comprehensible nor manageable. The lack of an individual and collective sense of agency found here could potentially erode RNs' sense of meaningfulness and readiness to invest in their work.

Translating the Patient Dignity Inventory.

BACKGROUND: The Patient Dignity Inventory (PDI) is based on an empirically-driven dignity model that has been developed and used for clinically assessing the various sources of dignity-related distress. In a recent review, it received the highest score as a useful instrument in both practice and research in palliative care. The PDI has been adapted to and validated for use in various countries, but not yet Sweden. AIMS: To translate the PDI into Swedish, including cultural adaptation for clinical use. METHODS: A multi-step process of translation, negotiated consensus, expert group discussion (n=7: four invited experts and three researchers) and cognitive interviewing (n=7: persons with palliative care needs). FINDINGS: Discussion, by the expert reviewers, of both linguistic and cultural issues regarding the content and readability of the translated Swedish version resulted in revisions of items and response alternatives, focusing mainly on semantic, conceptual, and experiential equivalence. A pilot version for cognitive interviews was produced. The analysis of data showed that most of the items were judged to be relevant by the persons with palliative care needs. CONCLUSION: The process of translation and adaptation added clarity and consistency. The Swedish version of the PDI can be used in assessing dignity-related distress. The next step will be to test this Swedish version for psychometric properties in a larger group of patients with palliative care needs before use in research.

Quality of life in men with metastatic prostate cancer in their final years before death - a retrospective analysis of prospective data.

BACKGROUND: Quality of Life (QoL) is the most important outcome for patients in palliative care along with symptom alleviation. Metastatic prostate cancer (mPC) is a life-threatening illness, and hence, a palliative care approach may be beneficial to this group. Over time, new life-prolonging treatments have been developed for men with mPC, but the possibility to prolong life should also be balanced against the men's QoL, particularly because there are side effects involved with these treatments. The aim of this study was to evaluate QoL, functioning and symptoms in men with mPC during their final years before death. METHODS: This is a retrospective analysis of data from a long-term prospective study of men (n = 3885) with prostate cancer from two regions in Sweden. Validated questionnaires asking about participants' QoL, functioning and symptoms were used to collect data. From the overall study, 190 men with mPC were identified. They were stratified into three groups, depending on the amount of time that had passed between the last questionnaire and their death; < 6 months, 6-18 months and > 18 months before death. RESULTS: Men with mPC generally rated their QoL poorly compared to established clinically significant threshold values. The group of men that were < 6 months before death rated their QoL, functioning and several symptoms significantly worse than the two other groups. Men that died after the year 2006 reported lower QoL and functioning and more pain and fatigue than those who died before 2006. CONCLUSION: The results in this study indicate that men with mPC have unmet needs with regards to QoL and symptoms. A palliative care approach, alongside possible life-prolonging treatments, that focuses on QoL and symptom relief, may serve as an important frame to give the best support to these men in their final years of life.

Not just things: the roles of objects at the end of life.

While the study of objects in care contexts is an emerging research field, it is largely overlooked in end of life (EoL) care. In this study, we empirically and inductively explore the roles of objects at the EoL from the perspective of bereaved family members. Open individual interviews were conducted with 25 family members recruited from palliative in-patient and homecare units, as well as residential care facilities. After verbatim transcription, the interviews were analysed thematically. Based on these interviews, we conceptualise the roles of objects as relating to temporality, transformations of the everyday, and care. Through analysis we offer two main insights, the first relating to interdependency between objects and people, and the second to the recognition of objects as simultaneously flexible and stable in this interdependent relationship. The capacity and challenge of objects as part of EoL care lies in their ability to encompass various viewpoints and relationships simultaneously. This might provide valuable insights for staff caring for dying persons and their families. We propose that staff's ability to navigate objects in care practices could be meaningful in supporting the relationships between individuals in EoL situations.

Factors Associated With Symptom Relief in End-of-Life Care in Residential Care Homes: A National Register-Based Study.

CONTEXT: Residential care homes (RCHs) are a common place of death. Previous studies have reported a high prevalence of symptoms such as pain and shortness of breath among residents in the last week of life. OBJECTIVES: The aim of the study was to explore the presence of symptoms and symptom relief and identify factors associated with symptom relief of pain, nausea, anxiety, and shortness of breath among RCH residents in end-of-life care. METHODS: The data consisted of all expected deaths at RCHs registered in the Swedish Register of Palliative Care (N = 22,855). Univariate and multiple logistic regression analyses were conducted. RESULTS: Pain was reported as the most frequent symptom of the four symptoms (68.8%) and the one that most often had been totally relieved (84.7%) by care professionals. Factors associated with relief from at least one symptom were gender; age; time in the RCH; use of a validated pain or symptom assessment scale; documented end-of-life discussions with physicians for both the residents and family members; consultations with other units; diseases other than cancer as cause of death; presence of ulcers; assessment of oral health; and prescribed pro re nata injections for pain, nausea, and anxiety. CONCLUSION: Our results indicate that use of a validated pain assessment scale, assessment of oral health, and prescribed pro re nata injections for pain, nausea, and anxiety might offer a way to improve symptom relief. These clinical tools and medications should be implemented in the care of the dying in RCHs, and controlled trials should be undertaken to prove the effect.

Public awareness of palliative care in Sweden.

OBJECTIVE: The aim of this study was to investigate the awareness of palliative care (PC) in a general Swedish population. DESIGN: We developed an e-survey based on a similar study conducted in Northern Ireland, consisting of 10 questions. Closed questions were primarily analyzed using descriptive statistics. Open questions were subject to inductive qualitative analysis. SUBJECTS: The study utilized a population sample of 7684 persons aged 18-66, of which 2020 responded, stratified by gender, age and region. RESULTS: Most participants reported 'no' ( n = 827, 41%) or 'some' ( n = 863, 43%) awareness of PC. Being female or older were associated with higher levels of awareness, as was a university-level education, working in a healthcare setting and having a friend or family member receiving PC. Most common sources of knowledge were the media, close friends and relatives receiving PC, as well as working in a healthcare setting. Aims of PC were most frequently identified as 'care before death', 'pain relief', 'dignity' and a 'peaceful death'. The preferred place of care and death was one's own home. The main barriers to raising awareness about PC were fear, shame and taboo, along with perceived lack of information and/or personal relevance. The term 'palliative care' was said to be unfamiliar by many. A number of strategies to enhance awareness and access to PC were suggested, largely reflecting the previously identified barriers. CONCLUSIONS: This survey found limited awareness of palliative care in an adult sample of the Swedish general public ≤ 66 years, and points to a more widespread disempowerment surrounding end-of-life issues.

End-of-life care in residential care homes: a retrospective study of the perspectives of family members using the VOICES questionnaire.

BACKGROUND: In Europe, residential care homes (RCHs) are replacing hospitals as the place where death occurs, and they play an important role in end-of-life (EOL) care. OBJECTIVE: The aim was to describe the quality of care during the last 3 months and last 3 days of life of those who died in RCHs as reported by family members. We also investigated whether there were differences in the EOL care of younger patients (<85 years) vs. the oldest old patients (≥85 years) as reported by family members. DESIGN: A retrospective survey design. METHODS: Deaths (n = 189) at 19 RCHs in one municipality in Sweden were included. Family members were sent the VOICES questionnaire 1 month after their elderly relative had died. Descriptive statistics were used. RESULTS: In the last 3 days before death, most family members reported there was enough help with nursing (93%) and personal care (78.5%). Among the family members, 86% were told that the resident was likely to die shortly. Most (94.1%) of residents were reported to have died at their preferred place. No significant difference was found between age groups. Family members also reported that about half of the elderly had pain (46.5%) and 86.4% received treatment; 55.9% had breathlessness and 39.7% received treatment. Breathlessness was significantly (p = 0.01) more common in the younger group, and they were treated more often (p = 0.006) than the oldest old. CONCLUSION: This study revealed an overall positive picture of personal and nursing care and communication. These findings indicate that the quality of EOL care at RCHs is high. Inadequate management was found for symptom relief the last days of life. This suggests that this subject merits further attention by care professionals. To achieve better quality of EOL care at RCHs, we emphasise the importance of systematically working to improve symptom relief.

Opening the doors a crack wider: palliative care research data in the public domain.

This report builds further on OPCARE9, an EU 7th framework project aiming to identify knowledge gaps in care provision in the last days of life. This study began with curiosity about new ways of generating research questions to meet future challenges in palliative care (PC) and how to better engage disciplines not generally included in PC research. We here describe an innovative methodological approach to generating data; put data relevant for PC research in the public domain; and raise issues about open access in PC research. We aimed to compile research questions from different disciplines, based on raw data consisting of approximately 1000 descriptions of non-pharmacological caregiving activities (NPCAs), generated through previous research. 53 researchers from different fields were sent the full list of NPCAs and asked to generate research questions from their disciplinary perspective. Responses were received from 32 researchers from 9 countries, generating approximately 170 research topics, questions, reflections and ideas, from a wide variety of perspectives, which are presented here. Through these data, issues related to death and dying are addressed in several ways, in line with a new public health approach. By engaging a broader group of disciplines and facilitating availability of data in the public domain, we hope to stimulate more open dialogue about a wider variety of issues related to death and dying. We also introduce an innovative methodological approach to data generation, which resulted in a response rate at least equivalent to that in our Delphi survey of professionals in OPCARE9.

Effectiveness of the Liverpool care pathway for the dying in residential care homes: An exploratory, controlled before-and-after study.

BACKGROUND: Clinical pathways aim to ensure that individuals receive appropriate evidence-based care and interventions, with the Liverpool Care Pathway for the Dying Patient focusing on end of life. However, controlled studies of the Liverpool Care Pathway for the Dying Patient, particularly outside of cancer settings, are lacking. AIM: To compare the effects of the Liverpool Care Pathway for the Dying Patient and usual care on patients' symptom distress and well-being during the last days of life, in residential care homes. DESIGN: Exploratory, controlled before-and-after study. During a 15-month baseline, usual care was carried out in two areas. During the following 15-months, usual care continued in the control area, while residential care home staff implemented Liverpool Care Pathway for the Dying Patient use in the intervention area. The intervention was evaluated by family members completing retrospective symptom assessments after the patient's death, using the Edmonton Symptom Assessment System and Views of Informal Carers - Evaluation of Services. SETTINGS/PARTICIPANTS: Patients who died at all 19 residential care homes in one municipality in Sweden. RESULTS: Shortness of breath (estimate = -2.46; 95% confidence interval = -4.43 to -0.49) and nausea (estimate = -1.83; 95% confidence interval = -3.12 to -0.54) were significantly reduced in Edmonton Symptom Assessment System in patients in the intervention compared to the control area. A statistically significant improvement in shortness of breath was also found on the Views of Informal Carers - Evaluation of Services item (estimate = -0.47; 95% confidence interval = -0.85 to -0.08). CONCLUSION: When implemented with adequate staff training and support, the Liverpool Care Pathway for the Dying Patient may be a useful tool for providing end-of-life care of elderly people at the end of life in non-cancer settings.

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.

Challenging situations when administering palliative chemotherapy - a nursing perspective.

UNLABELLED: Palliative chemotherapy treatments (PCT) are becoming more common for patients with incurable cancer; a basic challenge is to optimize tumour response while minimizing side-effects and harm. As registered nurses most often administer PCT, they are most likely to be confronted with difficult situations during PCT administration. This study explores challenging situations experienced by nurses when administering PCT to patients with incurable cancer. METHODS: Registered nurses experienced in administering PCT were asked in interviews to recall PCT situations they found challenging. Inspired by the narrative tradition, stories were elicited and analysed using a structural and thematic narrative analysis. RESULTS: A total of twenty-eight stories were narrated by seventeen nurses. Twenty of these were dilemmas that could be sorted into three storylines containing one to three dilemmatic situations each. The six dilemmatic situations broadly related to three interwoven areas: the uncertainty of the outcome when giving potent drugs to vulnerable patients; the difficulty of resisting giving PCT to patients who want it; and insufficient communication between nurses and physician. CONCLUSION: Nurses who administer PCT are engaged in a complex task that can give rise to a number of dilemmatic situations. The findings may be interpreted as meaning that at least some situations might be preventable if the knowledge and insight of all team members - nurses, physicians, patients, and relatives - are jointly communicated and taken into account when deciding whether or not to give PCT. Forming palliative care teams early in the PCT trajectory, could be beneficial for staff and patients.

International palliative care experts' view on phenomena indicating the last hours and days of life.

BACKGROUND: Providing the highest quality care for dying patients should be a core clinical proficiency and an integral part of comprehensive management, as fundamental as diagnosis and treatment. The aim of this study was to provide expert consensus on phenomena for identification and prediction of the last hours or days of a patient's life. This study is part of the OPCARE9 project, funded by the European Commission's Seventh Framework Programme. METHOD: The phenomena associated with approaching death were generated using Delphi technique. The Delphi process was set up in three cycles to collate a set of useful and relevant phenomena that identify and predict the last hours and days of life. Each cycle included: (1) development of the questionnaire, (2) distribution of the Delphi questionnaire and (3) review and synthesis of findings. RESULTS: The first Delphi cycle of 252 participants (health care professionals, volunteers, public) generated 194 different phenomena, perceptions and observations. In the second cycle, these phenomena were checked for their specific ability to diagnose the last hours/days of life. Fifty-eight phenomena achieved more than 80% expert consensus and were grouped into nine categories. In the third cycle, these 58 phenomena were ranked by a group of palliative care experts (78 professionals, including physicians, nurses, psycho-social-spiritual support; response rate 72%, see Table 1) in terms of clinical relevance to the prediction that a person will die within the next few hours/days. Twenty-one phenomena were determined to have "high relevance" by more than 50% of the experts. Based on these findings, the changes in the following categories (each consisting of up to three phenomena) were considered highly relevant to clinicians in identifying and predicting a patient's last hours/days of life: "breathing", "general deterioration", "consciousness/cognition", "skin", "intake of fluid, food, others", "emotional state" and "non-observations/expressed opinions/other". CONCLUSION: Experts from different professional backgrounds identified a set of categories describing a structure within which clinical phenomena can be clinically assessed, in order to more accurately predict whether someone will die within the next days or hours. However, these phenomena need further specification for clinical use.

Four essential drugs needed for quality care of the dying: a Delphi-study based international expert consensus opinion.

PURPOSE: The majority of dying patients do not have access to necessary drugs to alleviate their most common symptoms, despite evidence of drug efficacy. Our aim was to explore the degree of consensus about appropriate pharmacological treatment for common symptoms in the last days of life for patients with cancer, among physicians working in specialist palliative care. MATERIAL AND METHODS: Within OPCARE9, a European Union seventh framework project aiming to optimize end-of-life cancer care, we conducted a Delphi survey among 135 palliative care clinicians in nine countries. Physicians were initially asked about first and second choice of drugs to alleviate anxiety, dyspnea, nausea and vomiting, pain, respiratory tract secretions (RTS), as well as terminal restlessness. RESULTS: Based on a list of 35 drugs mentioned at least twice in the first round (n=93), a second Delphi round was performed to determine ≤ 5 essential drugs for symptom alleviation in the last 48 hours of life that should be available even outside specialist palliative care. There was ≥ 80% consensus among the participants (n=90) regarding morphine, midazolam, and haloperidol as essential drugs. For RTS, there was consensus about use of an antimuscarinic drug, with 9%-27% of the physicians each choosing one of four different drugs. CONCLUSION: Based on this consensus opinion and other literature, we suggest four drugs that should be made available in all settings caring for dying patients with cancer, to decrease the gap between knowledge and practice: morphine (i.e., an opioid), midazolam (a benzodiazepine), haloperidol (a neuroleptic), and an antimuscarinic.

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.

Towards a basic drug kit for the dying patient.

PURPOSE OF REVIEW: Awareness of palliative care, including knowledge and skills regarding symptom alleviation via pharmacological and non-pharmacological interventions, is limited in many settings. Lists have been published of recommended drugs for palliative care that include medications for different disease stages, using different modes of administration. RECENT FINDINGS: Recent studies confirm that many of the most common symptoms in dying patients, for example pain, dyspnoea, anxiety, nausea, and delirium, are similar regardless of diagnosis. The classes of drugs most commonly recommended for alleviation of these symptoms are opioids, neuroleptics, benzodiazepines, and antimuscarinic drugs. Other recommendations have the character of emergency kits of standard drugs for common symptoms, to be used when needed in caring for dying patients at home or in hospitals. SUMMARY: Recommendations for the most appropriate drugs which should be available for the care of dying patients in all settings is suggested to have potential to improve quality of care through increasing the confidence of physicians and nurses, being costeffective, decreasing the need for hospital admissions, and most of all - reducing suffering. Education and training at all levels, as well as further policy work through expert recommendations, care pathways, and media attention, are needed.

Complexity in non-pharmacological caregiving activities at the end of life: an international qualitative study.

BACKGROUND: In late-stage palliative cancer care, relief of distress and optimized well-being become primary treatment goals. Great strides have been made in improving and researching pharmacological treatments for symptom relief; however, little systematic knowledge exists about the range of non-pharmacological caregiving activities (NPCAs) staff use in the last days of a patient's life. METHODS AND FINDINGS: Within a European Commission Seventh Framework Programme project to optimize research and clinical care in the last days of life for patients with cancer, OPCARE9, we used a free-listing technique to identify the variety of NPCAs performed in the last days of life. Palliative care staff at 16 units in nine countries listed in detail NPCAs they performed over several weeks. In total, 914 statements were analyzed in relation to (a) the character of the statement and (b) the recipient of the NPCA. A substantial portion of NPCAs addressed bodily care and contact with patients and family members, with refraining from bodily care also described as a purposeful caregiving activity. Several forms for communication were described; information and advice was at one end of a continuum, and communicating through nonverbal presence and bodily contact at the other. Rituals surrounding death and dying included not only spiritual/religious issues, but also more subtle existential, legal, and professional rituals. An unexpected and hitherto under-researched area of focus was on creating an aesthetic, safe, and pleasing environment, both at home and in institutional care settings. CONCLUSIONS: Based on these data, we argue that palliative care in the last days of life is multifaceted, with physical, psychological, social, spiritual, and existential care interwoven in caregiving activities. Providing for fundamental human needs close to death appears complex and sophisticated; it is necessary to better distinguish nuances in such caregiving to acknowledge, respect, and further develop end-of-life care.

Quality indicators for care of cancer patients in their last days of life: literature update and experts' evaluation.

BACKGROUND: Quality indicators (QIs) are needed to monitor and to improve palliative care. Care of patients in the last days of life is a discrete phase of palliative care and therefore specific QIs are needed. This study aimed to identify and evaluate current QIs against which to measure future care of patients in the last days of life. METHODS: To identify QIs for patients in the last days of life an update of the literature and national guidelines was conducted. Subsequently, an international panel of palliative care experts was asked to evaluate the identified QIs: how well they describe care and how applicable they are for care in the last days of life. Also additional QIs were asked. RESULTS: In total, 34 QIs for care in the last days were identified in the literature and guidelines. The experts (response rate 58%) agreed with seven QIs as being good descriptors and applicable: concerning a home visit for the family following a patient's death, the presence of a dedicated family room, limited patients receiving chemotherapy, limited need for pain control, gastrointestinal symptoms, and communication from professional to patient and family. The experts also suggested 18 additional topics for QIs for the last days of life. CONCLUSION: Currently no definite set of QIs exist to describe quality of care of patients in their last days of life. New QIs that are focused on care for patients in their last days of life, their relatives, as well as their professional caregivers are needed.

Living with bodily changes in hormone-refractory prostate cancer.

OBJECTIVES: To review the current knowledge on living with bodily changes in hormone refractory prostate cancer (HRPC), treatment options, and common symptoms, and suggestions for improving our understanding of the experience of HRPC. DATA SOURCE: Existing literature, research, and clinical experience. CONCLUSION: Alleviation of bodily problems and providing care for men with HRPC is of utmost importance. It is important to talk about their situation and everyday life before asking about expected changes and problems related to the disease and its treatments. IMPLICATIONS FOR NURSING PRACTICE: A preliminary framework is suggested for understanding the experience of HRPC from a nursing perspective. These results support an existing body of knowledge emphasizing the paramount importance of symptom alleviation, but indicate another motivation, that of freeing time, when time is so limited. The importance of dialogue between patients and health care providers is highlighted.

Experiences of living with a deteriorating body in late palliative phases of cancer.

PURPOSE OF REVIEW: The trajectory of living with incurable cancer is characterized by increasing deterioration of the person's body. The aim of this review is to gain insight into the expert knowledge people have about their own lived experiences of bodily deterioration and symptoms in late palliative phases of cancer, and suggest a framework for understanding and studying these experiences. RECENT FINDINGS: When assessing the presence, severity and distress of symptoms and problems experienced by patients, it is important to carefully consider choice of instruments, which by nature, tend to target distinct problems, and expand assessment to include narrative approaches. Deterioration of the body and symptom distress can have dire consequences for the individuals, as these threaten the intactness of the person, may lead to desire to end one's life, can act as determinant of place of death, and dominate the sick person's existence. SUMMARY: Understanding the meaning bodily deterioration and symptoms have for patients is intrinsic for optimization of supportive interventions. We suggest that improved integration of knowledge from logical scientific and narrative approaches in research aiming to generate empirical and/or theoretical knowledge, and cross-fertilization of research from closely related areas can contribute to improving care for this vulnerable group of patients.

Time and bodily changes in advanced prostate cancer: talk about time as death approaches.

The disease trajectory of living with incurable cancer is characterized by increasing bodily deterioration and problems. In this paper, we have focused on the change in temporal awareness as manifested in the narrations of two men with hormone refractory prostate cancer and skeletal metastases as they approach death. The two men participated in in-depth research interviews during the last part of their lives, sharing a similar disease trajectory with increasing bodily change and decreasing physical function. Both died a lingering, cancer-related death. The first and last research interviews were analyzed using a discourse analytic method. Findings show that the temporal awareness in the interviews changes as the illness progresses and death approaches. In the last interviews, the present is flooded with bodily problems; the past and the future are hardly present except for the future beyond the men's own deaths. Pain, fatigue, nausea, and other symptoms figure largely in this change, and there is no time for much more than attending to bodily needs in a present that is dominated by problems. Here, the importance of alleviating bodily problems once again becomes paramount, and two questions are raised: Is the often reported withdrawal from life, when death is imminent, a physical necessity rather than a psychological one, and is it possible to free time from the time-consuming problems of the present by means of a more concentrated attempt to alleviate these problems?