Proxy perspectives regarding end-of-life care for persons with cancer

BACKGROUND: Each year, greater than a half million people die of cancer in the U.S. Despite progress in increasing access to palliative oncology services, end-of-life care still needs improvement. Measuring the quality of the end-of-life experience is difficult because of patient debility and reduced consciousness as death approaches. Family proxies have been proposed as valuable informants regarding the quality of end-of-life care. This article describes family proxy perspectives concerning care at the end of life in patients who died of advanced cancer. METHODS: In the context of a novel outpatient palliative care demonstration project, 125 family proxy respondents completed a structured survey by telephone 3 months to 6 months after the patient's death from breast, lung, or gastrointestinal cancer. Four key quality of care indicators were measured: decision-making and physician communication, location of death, hospice involvement, and end-of-life symptoms. RESULTS: Proxies reported that 78% to 81% of patients completed at least 1 form of advance directive and approximately half of them were helpful in guiding care. Communication with physicians regarding end-of-life treatment wishes occurred in 67% of cases, but only 57% of the patients actually made a plan with their physician to ensure that their wishes were followed. The majority of patients died in their location of choice, most often at home, and greater than half had hospice involvement for an average of 41.8 days before death. During the last week of life, the majority of patients experienced troublesome physical and emotional symptoms. CONCLUSIONS: Measurement of proxy perspectives is feasible as an indicator of the quality of end-of-life care, and the results of the current study provide actionable data for areas of improvement in palliative oncology care.     

Barriers to care for breast cancer: A qualitative study in Ireland

Disparities in survival after breast cancer persist. Cancer registry data that are often used to assess associated factors only explain some of the differences. The purpose of this study was to obtain information from disadvantaged Irish women concerning possible barriers to care for breast cancer above and beyond risk factors collected by cancer registries. We used a qualitative interview study with disadvantaged women in treatment for breast cancer, following the methods of thematic analysis. Important themes potentially related to disparity occurred in each treatment phase. Before diagnosis themes included delays in diagnosis. During treatment themes concerned surgical complications, communication difficulties and use of alternative therapies. During the post treatment phase a strong theme was lack of compliance with hormone therapy. Overarching themes were stress related to disadvantage, including financial difficulties, obesity, alcohol use, fears of eviction from home, worry about dependent relatives. Future studies of the breast cancer survival gap arising from socio‐economic disadvantage may benefit from a mixed‐methods approach that combines cancer registry data with personal interviews to understand the persistence of survival disparities. As breast cancer rates continue to rise disparities in survival due to socio‐economic disadvantage will continue, but can be addressed and mitigated.     

A qualitative study of work and work return in cancer survivors

Few studies have examined the impact of cancer on the survivor's quality of work life. The purpose of this qualitative study is to describe the work experiences among a diverse group of cancer survivors and to explore factors influencing decisions about work after cancer diagnosis and treatment. We interviewed 28 participants with a broad range of socioeconomic backgrounds and primary cancer sites. Qualitative results indicate that after learning about their cancer diagnosis, participants had diverse and complex patterns of work return and work change, and experienced a variety of factors that influenced post-cancer decisions. Experiences at work after cancer also varied in relation to how others responded, changes in productivity, effects of cancer and treatment on work, and feelings about work. Most respondents received little guidance from their physicians about work, and many participants described their cancer as impacting their priority of work relative to other aspects of their lives. Our findings reinforce the complexity of measuring employment outcomes and the range of adaptations made to improve the quality of work life. Additional research is needed to identify prognostic factors that can guide clinical or workplace efforts to restore cancer survivors to their desired level of work function and economic productivity.     

Patients' perceptions of transrectal prostate biopsy: a qualitative study

This study explored men's experiences of transrectal prostate biopsy. Fifty men who had had a prostate biopsy talked about the experience as part of an in-depth interview; 36 were interviewed in 2000 about all aspects of prostate cancer, and 14 in 2005 about their experience of prostate-specific antigen testing, subsequent investigations and treatment. Men were recruited via urologists, general practitioners and support groups. In both studies, we aimed to include men of various ages, from different backgrounds, who lived, and had been investigated and treated, in different parts of the UK. A qualitative interpretive approach was taken, combining thematic analysis with constant comparison. Most men described the procedure as merely 'uncomfortable', but some found it stressful, exhausting and extremely painful. Worries included the fear that cancer cells might pass from a man to his wife during ejaculation, and that a biopsy might spread cancer cells to other parts of the body. Men should be given detailed information before a biopsy, so that they are well aware of what might happen. They should also be given the opportunity to voice their fears, so that they can be reassured, and offered some form of pain relief.     

Special considerations for haematology patients in relation to end-of-life care: Australian findings

Recent hematology clinical guidelines recommend that palliative care specialists should have central roles in hemato-oncology teams. However, the available research evidence indicates there are presently significant obstacles to the integration of palliative care in hematology. The following discussion presents findings from an Australian study designed to address the problems associated with lack of referral of hematology patients to the palliative system through the development of a best-practice model for end-of-life care for these diagnostic groups. The preliminary step in the development of such a model is to document the factors that denote the special characteristics of the end-of-life stage of hematological conditions and their treatments. This article presents the list of special considerations from a nursing perspective, including issues associated with the high-tech nature of treatments, the speed of change to a terminal event, the need for blood products and possibility of catastrophic bleeds, the therapeutic optimism based on a myriad of treatment options and the clinical indices of the terminal trajectory. The nursing insights provide an important foundation for building a practical, patient-centred model for terminal care in hematology.     

Disentangling cancer patients' trust in their oncologist: a qualitative study

Objective: Patients' trust in their physician is crucial for an optimal treatment. Yet, among oncology patients, for whom trust might be especially important, research into trust is limited. A qualitative interview study was carried out to investigate (1) to what extent aspects of trust important to cancer patients reflect the aspects described in other patient populations and (2) which additional themes emerge. Methods: In‐depth, semi‐structured interviews were performed with a purposefully selected heterogeneous sample of 29 cancer patients. Transcribed interviews were analyzed using MAXqda. Data were clustered across interviews to derive common themes related to trust. Results: Three commonly described aspects, i.e., fidelity, competence and honesty, were strongly reflected in patients' accounts of trust in their oncologist. Confidentiality was irrelevant to many. An additional aspect, labeled ‘caring’, was distinguished. Central to the accounts of these patients was their need to trust the oncologist, arising from the severe and life‐threatening nature of their disease. This necessity to trust led to the quick establishment of a competence‐based trust alliance. A deeper, more emotional bond of trust was developed only after repeated interaction and seemed primarily based on the oncologist's interpersonal skills. Conclusions: The need for trust encountered in this study underscores the power imbalance between cancer patients and their oncologist. Additionally, these results imply that when aiming to measure cancer patients' trust, what we might actually be assessing is patients' intention and determination to trust their oncologist. Copyright © 2011 John Wiley & Sons, Ltd.