Palliative Care

"ABSTRACT


Objective: My objective was to investigate the experiences of women diagnosed with metastatic breast cancer.

Method: I did a qualitative study based on interview data. Fourteen women with metastatic breast cancer were recruited into a larger study of online support group use. Participants were interviewed by phone.

Results: The women indicated that they experience distress because of concerns about body image, declines in aspects of their sexual lives, and worries about the effect of stress on their illness. The stress that worries these women comes from fear of dying, fear of disease progression and debilitation, the loss of their future, and practical concerns. The women were also likely to experience a decline in daily activity after being diagnosed with metastatic disease. They become less active because of the physical symptoms of the illness and the side effects of treatments, the medicalization of their lifestyle, their desire to avoid stressful situations, the constraints imposed by their social world, and the need to maintain disability benefits. Although women are often in need of emotional and material support from others after they are diagnosed, social support can decrease, both because women find it difficult to be open about the difficulties they face and because the responses of others are not adequately supportive. Distress and declines in daily activity and social support can feed into each other to create a vicious circle.

Significance of results: This paper makes a significant contribution to the literature by providing a rich description of how metastatic breast cancer affects women. Further research, with more diverse samples, is needed in this understudied area."

This article elaborates the ascent of what we call the empathy as care model in contemporary medicine. We make the following arguments: First, does empathy mean care? We examine this question in the context of medicine. We argue that empathy may not mean care throughout all medical practice, as findings from the medical education field show.
However, empathy as care is rising in one specialty, palliative and hospice medicine. This specialty best represents the ideal-typical traits of the empathy as care model. This work contributes to the sociology of health and illness literature and to interpretivist sociological theorizing by examining empathy within the context of heath care meant to relieve pain
and discomfort, often at the end of life, rather than curative medicine.

Results: Twenty five (58%) control patients died at home compared with 124 (67%) patients allocated to hospital at home. This difference was not significant; intention to treat analysis did not show that hospital at home increased the number of deathsat home. Seventy three patients ...

Funding models influence provision and development of palliative care services. As palliative care integrates into mainstream health care provision, opportunities to develop funding mechanisms arise. However, little has been reported on what funding models exist or how we can learn from them. To assess national models and methods for financing and reimbursing palliative care. Initial literature scoping yielded limited evidence on the subject as national policy documents are difficult to identify, access and interpret. We undertook expert consultations to appraise national models of palliative care financing in England, Germany, Hungary, Republic of Ireland, New Zealand, The Netherlands, Norway, Poland, Spain, Sweden, Switzerland, the United States and Wales. These represent different levels of service development and a variety of funding mechanisms. Funding mechanisms reflect country-specific context and local variations in care provision. Patterns emerging include the following: Pr...

The term intangible describes something that has no physical presence and that cannot be touched –love and truth, for example, are both intangible. To a certain extent, many of the values of palliative care are also intangible. In this article, we discuss these facets of palliative care along with the nature of advanced illness and the essence of caring. We also reflect on how these intangible values are perceived, both by those who receive palliative care and those who provide it. Finally, we analyse the difficulty in conveying the message of palliative care, to society and to other professionals, precisely because of the intangible nature of what we wish to transmit.

Oral health is vital for overall health. Oral squamous cell carcinoma (OSCC) causes significant mortality and morbidity. The treatment options for OSCCs include a combination of surgery, chemotherapy and radiotherapy depending on the final histopathological results. Even with advanced reconstructive techniques, the cosmetic deformity is marked, especially if the lateral commissure of the lips has to be sacrificed, thus compromising on the Oral health related Quality of Life (OHRQOL). Palliative care dentistry is the management of patients with active, progressive, advanced disease in whom the oral cavity has been compromised by the primary disease or by its treatment. This review was based on the purpose to study the Oral Care at Home in post-operative (op) Oral cancer patients. Literature search was done using key words, followed by inclusions and exclusions. The search was based on palliative care in oral cancer and home interventions in post-op oral cancer. Relevant articles were searched from various databases such as PubMed and Google Scholar. These articles were assessed by experts. The strong impact of disease stage on the prognosis spotlights the necessity of palliative care in these patients especially as a home care, since most patients suffer from painful swallowing and rely on artificial feeding with Nasogastric tube or have geriatric neuro symptoms and patients might also be bed bound with deteriorating activities of daily living (ADL). Hence, this review highlights the oral care at home in post-op oral cancer patients with future research implications in Palliative Dentistry.

Objective: Definitions and measures of significant others' mental health vary, but stress processes have been associated with caregiver outcomes of this kind. Thus, various mental health outcomes probably appear, either as specific responses to particular types of caregiver stressors, or as part of a general response resulting from an accumulation of various stressors. The present study explores the occurrence of symptoms of strain with regard to depression, exhaustion, and emotional well-being in significant others of patients dying from lung cancer, and how these symptoms coexist.Methods: Measures used were the Montgomery Åsberg Depression Rating Scale, the OLdenburg Burnout Inventory, and the Swedish Health-Related Quality of Life Survey. Data from 84 significant others of patients dying from lung cancer were collected at a time-point during the last 4 months before the patients died and subsequently analysed. The occurrence of symptoms of strain was established by creating cut-off scores from the general population. To explore how the different symptoms coexisted, hierarchical agglomerative cluster analyses were conducted using Ward's method.Results: Approximately 40% of the significant others reported symptoms of strain for each of the three outcomes, and a coexistence was found since the significant others clustered as subgroups, ranging from ‘high on all scales’ to ‘low on all scales’.Conclusion: A considerable proportion of the significant others were thus negatively affected in terms of mental health. We conclude that being a significant other of a person dying from lung cancer most likely results in a general response to this major life event. Copyright © 2009 John Wiley & Sons, Ltd.

Spiritual, existential, and psychological issues represent central components of quality of life (QOL) in palliative care. A better understanding of the dynamic underlying these components is essential for the development of interventions tailored to the palliative context. The aims were to explore (i) the relationship between spirituality, meaning in life, wishes for hastened death and psychological distress in palliative patients, and (ii) the extent to which these non-physical determinants influence QOL. A cross-sectional study involving face-to-face interviews with Swiss palliative patients was performed, including the Schedule for Meaning in Life Evaluation (SMILE), the Spiritual Subscale of the Functional Assessment of Chronic Illness Therapy (FACIT-Sp), the Idler Index of Religiosity (IIR), the Hospital Anxiety and Depression Scale (HADS) and the Schedule of Attitudes toward Hastened Death (SAHD). QOL was measured with a single item visual analogue scale (0-10). 206 patients ...

In end-stage heart failure (HF) that is not eligible for mechanical assist device or heart transplant, palliative care serves to maximise symptom control and quality of life. We sought to evaluate the impact of home-based advance care programme (ACP) on healthcare utilisation in end-stage HF patients. Prospectively collected registry data on all end-stage HF recruited into ACP between July 2008 and July 2010 were analysed. Chart reviews were conducted on HF database and hospital electronic records. Phone interview and home visit details by ACP team were extracted to complete data entry. HF and all-cause hospitalisations 1 year before, and any time after ACP inception were defined as events. For the latter analysis, follow-up duration adjustment to event episodes was performed to account for death less than a year. Forty-four patients (mean age 79 years, 39% men) were followed up for 15±8 months. Fifty-seven percent had diabetes, 80% ischaemic heart disease, and 60% chronic kidney di...

Palliative care aims at improving the patient’s quality of life. The assessment of this quality of life (QoL) is crucial for the evaluation of palliative care outcome. Many patients require hospital admissions for symptom control during their cancer journey and most of them die in hospitals, although they would like to stay at home until the end of their lives. In 1986, the European Organization for Research and Treatment (EORTC) initiated a research programme to develop an integrated, modular approach for evaluating the quality of life of patients participating in international clinical trials. This questionnaire measures cancer patients’ physical, psychological and social functions and was used in a wide range of clinical cancer trials with large numbers of research groups and also in various other non-trial studies. The aim of this study was to evaluate the psychometric properties, especially the reliability, validity and applicability of the EORTC QLQ-C30 in a German sample of t...

BACKGROUNDAberrant DNA methylation, which results in leukemogenesis, is frequent in patients with myelodysplastic syndromes (MDS) and is a potential target for pharmacologic therapy. Decitabine indirectly depletes methylcytosine and causes hypomethylation of target gene promoters.Aberrant DNA methylation, which results in leukemogenesis, is frequent in patients with myelodysplastic syndromes (MDS) and is a potential target for pharmacologic therapy. Decitabine indirectly depletes methylcytosine and causes hypomethylation of target gene promoters.METHODSA total of 170 patients with MDS were randomized to receive either decitabine at a dose of 15 mg/m2 given intravenously over 3 hours every 8 hours for 3 days (at a dose of 135 mg/m2 per course) and repeated every 6 weeks, or best supportive care. Response was assessed using the International Working Group criteria and required that response criteria be met for at least 8 weeks.A total of 170 patients with MDS were randomized to receive either decitabine at a dose of 15 mg/m2 given intravenously over 3 hours every 8 hours for 3 days (at a dose of 135 mg/m2 per course) and repeated every 6 weeks, or best supportive care. Response was assessed using the International Working Group criteria and required that response criteria be met for at least 8 weeks.RESULTSPatients who were treated with decitabine achieved a significantly higher overall response rate (17%), including 9% complete responses, compared with supportive care (0%) (P < .001). An additional 12 patients who were treated with decitabine (13%) achieved hematologic improvement. Responses were durable (median, 10.3 mos) and were associated with transfusion independence. Patients treated with decitabine had a trend toward a longer median time to acute myelogenous leukemia (AML) progression or death compared with patients who received supportive care alone (all patients, 12.1 mos vs. 7.8 mos [P = 0.16]; those with International Prognostic Scoring System intermediate-2/high-risk disease, 12.0 mos vs. 6.8 mos [P = 0.03]; those with de novo disease, 12.6 mos vs. 9.4 mos [P = 0.04]; and treatment-naive patients, 12.3 mos vs. 7.3 mos [P = 0.08]).Patients who were treated with decitabine achieved a significantly higher overall response rate (17%), including 9% complete responses, compared with supportive care (0%) (P < .001). An additional 12 patients who were treated with decitabine (13%) achieved hematologic improvement. Responses were durable (median, 10.3 mos) and were associated with transfusion independence. Patients treated with decitabine had a trend toward a longer median time to acute myelogenous leukemia (AML) progression or death compared with patients who received supportive care alone (all patients, 12.1 mos vs. 7.8 mos [P = 0.16]; those with International Prognostic Scoring System intermediate-2/high-risk disease, 12.0 mos vs. 6.8 mos [P = 0.03]; those with de novo disease, 12.6 mos vs. 9.4 mos [P = 0.04]; and treatment-naive patients, 12.3 mos vs. 7.3 mos [P = 0.08]).CONCLUSIONSDecitabine was found to be clinically effective in the treatment of patients with MDS, provided durable responses, and improved time to AML transformation or death. The duration of decitabine therapy may improve these results further. Cancer 2006. © 2006 American Cancer Society.Decitabine was found to be clinically effective in the treatment of patients with MDS, provided durable responses, and improved time to AML transformation or death. The duration of decitabine therapy may improve these results further. Cancer 2006. © 2006 American Cancer Society.

The safety of transdermal fentanyl (TF) in comparison with slow-release oral morphine (SROM) in moderate-severe pain was assessed. A systematic review of the literature was performed to identify all randomized trials comparing TF and SROM in moderate-severe pain. Overall safety was the primary end point. Trials enrolling both cancer and non-cancer patients were included in the analysis. Heterogeneity was assessed using the Mantel-Haenszel test; a random effects model was used for the pooled analysis. Cumulative and distinctive analyses for cancer and non-cancer pain were performed whenever the outcome was reported in at least two trials. Five trials met the inclusion criteria. A significant advantage of TF was documented for constipation, laxative use, and urinary retention. TF was preferred by cancer and non-cancer patients. A difference in favour of SROM was documented for nausea, diarrhea, and sweating in cancer and non-cancer patients. No differences were observed for the other ...

Scarce medical resources during a natural disaster challenge the existing protocols for medical intervention. Triage decisions about which patient to care for can be extremely stressful for a medical team. This case analysis describes the experience of one mobile field hospital in Haiti in the aftermath of the January 12, 2010 earthquake. The medical team was confronted with the need to choose which of three critically ill patients should receive the remaining, dwindling oxygen supply. The ethical framework around these decisions is discussed. The development of an onsite ethics committee from team members is suggested to help lighten the burden of decision making off of the individual care provider.

Objective: To date, no measure of social support has been developed specifically for either palliative care or oncology settings. The present study examined the psychometric properties of the Duke-University of North Carolina Functional Social Support Questionnaire (DUFSS) in order to (1) assess the adequacy of the scale in the context of severe medical illness and (2) evaluate whether a brief subset of items might generate roughly comparable utility. Method: The 14-item DUFSS was administered to 1,362 individuals with advanced cancer or AIDS. Classical test theory (CTT) and item response theory (IRT) analyses were utilized to develop an abbreviated version of the DUFSS that maintained adequate reliability and validity and might increase the feasibility of its administration in a palliative care setting. The reliability and concurrent validity of the DUFSS-5 were evaluated in a separate validation sample of patients with advanced cancer. Results: Analyses generated a five-item versi...

Background To assess the psychometric properties, including internal consistency, construct validity, criterion validity, criterion-group validity, and responsiveness, the Reviewed McGill Quality of Life Questionnaire (MQOL-R), into Brazilian Portuguese-(BrP). Also, to analyze the relationship of the BrP-MQOL-R with the scores on the Karnofsky Performance Scale (KPS) and on the Numerical Pain Scale (NPS 0–10). Methods The BrP-MQOL-R was administered to a sample of 146 adults (men = 78). A team of experts translated the MQOL-R according to international guidelines. Convergent validity and Confirmatory factor analysis (CFA) was performed. Results The BrP-MQOL-R Cronbach’s alpha was 0.85. CFA supported the original four-factor structure, with the following revised model fit-indices: PCLOSE = 0.131, Tucker-Lewis Index (TLI) rho 2 = 0.918, incremental fit index (IFI) delta 2 = 0.936. The convergence validity is supported by a significant correlation between BrP-MQOL-R total scores and th...

Background: Some patients do not receive adequate pain and symptom relief at the end of life, causing distress to patients, families and healthcare professionals. It is unclear whether undertreatment of symptoms occurs, in part, because of nurses’ concerns about legal and/or disciplinary repercussions if the patient dies after medication is administered. Aim: The aim was to explore nurses’ experiences and knowledge of the law relating to the provision of end-of-life pain and symptom relief. Design: Semi-structured interviews with nurses were assessed using a six-stage hybrid thematic analysis technique. Setting/participants: Four face-to-face and 21 telephone interviews were conducted with nurses who routinely prescribed and/or administered pain and symptom relief to patients approaching the end of their lives in Queensland and New South Wales, Australia. Results: While many nurses had no personal experiences with legal or professional repercussions after a patient had died, the fea...

As part of the Closing the Quality Gap: Revisiting the State of the Science series of the Agency for Healthcare Research and Quality (AHRQ), this systematic review sought to identify completed and ongoing evaluations of the comprehensive patient-centered medical home (PCMH), summarize current evidence for this model, and identify evidence gaps. We searched PubMed®, CINAHL®, and the Cochrane Database of Systematic Reviews for published English-language studies, and a wide variety of databases and Web resources to identify ongoing or recently completed studies. Two investigators per study screened abstracts and full-text articles for inclusion, abstracted data, and performed quality ratings and evidence grading. Our functional definition of PCMH was based on the definition used by AHRQ. We included studies that explicitly claimed to be evaluating PCMH and those that did not but which met our functional definition. Seventeen studies with comparison groups evaluated the effects of PCMH ...

When a patient approaches the end of life, healthcare professionals are faced with a number of ethical
issues relating to the decision to withhold (not start) or withdraw (stop) treatment. These include
whether life should be maintained at all costs, using all available means, even if the treatment is a great
burden for the patient, or whether it is preferable to accept the imminence of death and focus on the
patient’s comfort. Ethical principles can help professionals, the patient and loved ones weigh up the
benefits, burdens and risks of a specific treatment. Today’s healthcare system considers artificial nutrition
and hydration (ANH) to be a major life-sustaining treatment, but opinions over this are divided. Research
shows that ANH is not always beneficial to patients when they have stopped oral intake. On the contrary,
it has been found that caloric deprivation and terminal dehydration provide a number of benefits for the
patient. This article will discuss the dilemmas that confront practitioners in relation to withholding and
withdrawing treatment, in particular ANH, at the end of a patient’s life.