Palliative Care

All too often neglected, maximal quality improvement in the setting of life-limiting illness and noxious symptomatology is a worthy medical, public health, and humanitarian goal. The World Health Organization estimates that, globally, about 60% of all people who die would benefit from palliative care before death; however, palliative care is not exclusively reserved for patients at the end of life 1 .

"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.

Background: The development of a brief valid tool to screen for depression in patients with advanced cancer is important. This paper reports data on the psychometric properties of the Brief Edinburgh Depression Scale. Method: Two hundred and forty six patients who fulfilled the inclusion criteria completed the 10-item EDS and Present State Examination. Results: Factor extraction revealed 6 items from the ten item EDS. The most valid cut off for defining a case, using the PSE diagnosis as the "gold-standard", was a score of 6 out of 18 on the Brief Edinburgh Depression Scale which gave a sensitivity of 72% and specificity of 83% with a PPV of 65.1% and NPV of 87.1%. Conclusions: The six item EDS is a brief and sensitive method of screening for depression in advanced cancer patientsthis novel use of the Edinburgh depression scale may have a significant impact on the assessment and thus management of this distressing symptom.

Background: Palliative care has been proposed for progressive non-cancer conditions but there have been few evaluations of service developments. We analysed recruitment, compliance and follow-up data of a fast track (or wait list control) randomised controlled trial of a new palliative care service-a design not previously used to assess palliative care. Methods/Design: An innovative palliative care service (comprising a consultant in palliative medicine, a clinical nurse specialist, an administrator and a psychosocial worker) was delivered to people severely affected by multiple sclerosis (MS), and their carers, in southeast London. Our design followed the MRC Framework for the Evaluation of Complex Interventions. In phase II we conducted randomised controlled trial, of immediate referral to the service (fast-track) versus a 12-week wait (standard best practice). Main outcome measures were: compliance (the extent the trial protocol was adhered to), recruitment (target 50 patients), attrition and missing data rates; trial outcomes were Palliative Care Outcome Scale and MS Impact Scale. Results: 69 patients were referred, 52 entered the trial (26 randomised to each arm), 5 refused consent and 12 were excluded from the trial for other reasons, usually illness or urgent needs, achieving our target numbers. 25/ 26 fast track and 21/26 standard best practice patients completed the trial, resulting in 217/225 (96%) of possible interviews completed, 87% of which took place in the patient's home. Main reasons for failure to interview and/ or attrition were death or illness. There were three deaths in the standard best practice group and one in the fast-track group during the trial. At baseline there were no differences between groups. Missing data for individual questionnaire items were small (median 0, mean 1-5 items out of 56+ items per interview), not associated with any patient or carer characteristics or with individual questionnaires, but were associated with interviewer. Conclusion: This is the first time a fast track (or wait list) randomised trial has been reported in palliative care. We found it achieved good recruitment and is a feasible method to evaluate palliative care services when patients are expected to live longer than 3-6 months. Home interviews are needed for a trial of this kind; interviewers need careful recruitment, training and supervision; and there should be careful separation from the clinical service of the control patients to prevent accidental contamination.

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...

D efinition of Palliative care: "Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by interdisciplinary team taking into consideration physiological, psychosocial, and spiritual needs" (WHO, 2003) Suffering: Suffering is loss of meaning. Suffering occurs when there is a gap between expectation and reality. Principles of Palliative Care: Focus on quality rather than quantity of life. Effective communication at all levels. Respect for autonomy and choice. Effective symptom management. Holistic, multi-professional approach. Caring about the person and family. Palliative care is adding life to days, not adding days to life. It is the right of the patients not to feel pain, suffering or fear at all stages of the disease. Holistic approach is essentials for the relieve of suffering. Pain Management: Pain is an important and undertreated symptom of life-threatening illness. Correct use of analgesic medication, following the guidelines of the WHO step ladder, with the addition of adjuvant analgesics, should control the pain in nearly all cases. Attention should also be given to other aspects of pain, psychosocial or spiritual; Sometimes called "total pain". Bringing pain under control and keeping it there means assessing each aspect of pain and monitoring it. These are core skills of palliative care doctors and nurses. Medications are the foundation of pain control. Anti-inflammatory, anti-depressant and steroid medication may also have a complementary role for some patients and some sources of pain. Complementary measures are used as well as medical treatments. Wafa Qasem Ahmad has completed her Medical degree from Kuwait University in June 1989. She is working as a Consultant, Internist in a Private Clinic.

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.

Every palliative care patient should have the expectation that acute and chronic pain management will be an integral part of their overall care. However, in all too many instances, the pain of cancer is often grossly under-treated. This issue is of concern because more than 80% of patients with cancer pain can ®nd adequate relief through the use of simple pharmacological methods. It is even more troubling to note that women and minority groups have their cancer pain under-treated more frequently. Physicians with the basic skills of assessment and treatment will be able to control the symptoms in the majority of cancer pain patients. However, there are still some patients who may require other modalities to control their moderate to severe pain. A thorough understanding of all pain management options will help the gynaecological oncologist to maintain an acceptable quality of life for their patients throughout the therapeutic and palliative phases of care.

Palliative care and hospice for animals is a new phenomenon. Palliative care originated in the United Kingdom in the 1960s to address the unmet needs of terminally ill patients and their families. The World Health Organization defines palliative care as ".an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual" (www. who.int/cancer/palliative/definition/en/). Likewise, hospice originated in the United Kingdom with formal facilities for end-of-life patients. Hospice in the United States has developed as a practice involving an interdisciplinary team and a variety of settings. Dr Alice Villalobos, a veterinarian who has practiced oncology since the 1970s, has coined the term pawspice to describe the transfer of principles and practices from human medicine to veterinary medicine. Pets are living longer and better than ever before, and their place in the home is more and more integral to the fabric of the family. Pet owners are understandably expecting and requesting a higher standard of care and a greater variety of options as their beloved animal companions approach the end of their lives. Dr Villalobos is also credited with developing a quality-of-life scale for animal hospice patients (www.veterinarypracticenews. com/images/pdfs/Quality_of_Life.pdf) (see the article by Alice E. Villalobos elsewhere in this issue for further exploration of this topic). As veterinarians and members of the veterinary health care team expand their practices to include palliative care and hospice for their patients, it is important that they The authors have nothing to disclose.

Background: Informal caregivers of palliative patients took part in existential behavioral therapy (EBT), a group intervention comprising mindfulness exercises to reduce psychological distress and improve quality of life. Objectives: This study examined which aspects of EBT were perceived as helpful during the first year of bereavement and how mindfulness was understood and transferred into daily life. Design: Sixteen problem-centered, semi-structured interviews were evaluated with content analysis. Results: Two main categories were found: social support and self-regulation. Social support includes sense of belonging as well as emotional, cognitive, and practical help experienced from others. Mindfulness and acceptance, a clear focus on the positive, and orientation toward the future were helpful strategies of selfregulation; these were also part of the EBT intervention. Mindfulness was understood as permitting emotions and acceptance of one's inner processes, even if they were not pleasant, and was found to be helpful to stop ruminative thinking. Conclusions: The categories considered as being helpful parallel core elements of EBT and recent grief theories. The intervention was found to be supportive and met the needs of the participants. The interviewees appreciated the continuity of EBT support from palliative care into bereavement.

Advances in pharmacology and technology have sharply reduced mortality of extremely preterm infants at the expense of an increasing number of survivors with handicaps and disabilities. The EURONIC study among neonatal intensive care units across Europe demonstrates that treatment of infants born at the limits of viability raises challenging ethical, moral, legal, and emotional dilemmas among neonatologists, nurses, and parents alike. When is it wise to withhold or withdraw intensive care and, if so, what are the needs of the nonviable or dying infant, family, and neonatal staff to provide a humane and compassionate death? This process begins with a thorough determination of diagnosis and prognosis, followed by decision making on the basis of futility of treatment or quality-of-life issues, and counseling of parents. Withholding or withdrawing of intensive care should be synonymous with palliative care. Perinatal audit and after-care of the family complete the process. The Dutch viewpoint and practice guidelines on withholding and withdrawing of neonatal intensive care are presented.

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.

Introduction: At some time, every general surgeon will be faced with the task of trying to decide what to do with a patient who presents with rectal cancer and unresectable distant metastases. How safe is resectional surgery? What sort of palliation may be expected following resection of the primary tumour? In an attempt to answer these questions, the management and outcomes of all patients with rectal cancer and distant metastases, who were primarily referred to the colorectal unit at King Faisal Specialist Hospital were examined. Methods: All patients who underwent primary surgery for rectal cancer in the presence of metastatic disease were identified. The charts of these patients were examined and their morbidity, mortality and survival were determined. Results: Over an 8-year period 22 patients (average age 54 years) underwent rectal resectional surgery in the presence of metastatic disease. There were 13 men and nine women. The commonest complaint was rectal bleeding. All patients had chest radiographs. Pulmonary metastases were identified in four patients. Nineteen abdominal and pelvic computed tomography scans were performed and eight showed evidence of metastases. Skeletal radiographs in two patients showed evidence of bone metastasis. At operation, intraperitoneal metastases were found in 18 patients. Nine of these were not identified preoperatively. Six patients underwent abdomino-perineal resection, nine anterior resection and seven a Hartmann's procedure. Eight patients developed a significant postoperative complication and one died 42 days after surgery. The mean length of hospital stay was 18.6 days. Nine patients received preoperative radiotherapy. Four patients had palliative radiotherapy, two for bony, one for liver and one for peritoneal metastases. Patients were followed up for a mean of 1.1 years. During follow up, 11 returned to the emergency room on 24 occasions. Two patients required readmission. No patient had further rectal bleeding. The mean survival was 1.3 years. Conclusion: Patients with rectal cancer and unresectable distant metastases can be successfully palliated by resection of the primary tumour with low morbidity and mortality. The early involvement of a palliative care team facilitates patient management and helps patients enjoy what remains of the rest of their lives at home, in comfort and with good symptom control.

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.

Background: A World Health Assembly (WHA) resolution adopted in 2014 strongly encourages member states to integrate palliative care (PC) in undergraduate training for health professionals. Objective: The study objective was to describe a consensus-based process workshop to develop PC competences for medical and nursing schools in Colombia and to present a summary of the findings. Methods: The workshop included 36 participants representing 16 medical and 6 nursing schools from 18 universities in Colombia. Participants were distributed in four thematic groups. Using the International Association for Hospice and Palliative Care (IAHPC) List of Essential Practices (LEP) as guidance, they were asked to discuss and define PC competencies at the undergraduate level. Participants provided feedback and approved each recommendation, and then were asked to complete an evaluation. Results: The resulting competences were separated into six categories: (1) Definition and Principles of PC, (2) Identification and Control of Symptoms, (3) End-of-Life Care, (4) Ethical and Legal Issues, (5) Psychosocial and Spiritual Issues, and (6) Teamwork. A comparative analysis revealed that treatment of several symptoms in the IAHPC LEP (pain, dyspnea, constipation, nausea, vomit, diarrhea, delirium, and insomnia) were included in the competencies. All of the IAHPC LEP related to psychological/emotional/spiritual care was included. The evaluation rate of return was 80%. The assessment was very positive: total score of 4.7/5.0; SD = 0.426), with 89% considering the workshop to be helpful. Conclusion: The workshop provided an opportunity for individuals from different disciplines to discuss competencies and achieve consensus. The resulting competencies will be helpful in the development of PC curricula for physicians and nurses throughout schools in Colombia and other countries.

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...

Sedation is a commonly used procedure in many medical disciplines including palliative care. It is indicated for a variety of reasons and the type of sedation varies considerably. For example, intentional temporary sedation is sometimes used for procedures (chesttube insertion, endoscopy, etc.) or insomnia whereas at other times sedation is unintentional (sometimes called secondary or consequential sedation) such as when sedation occurs as a side-effect of a drug being used to control a symptom. Thus the topic of sedation in palliative care practice is vast and complex. To develop this framework the authors reviewed the international literature and palliative sedation policies and protocols from within and without Canada. Recommendations from the first draft were presented at two workshops to full-time and part-time palliative care physicians and to family physicians and a subsequent draft based on feedback from the workshops was then sent to selected inter-professional reviewers across Canada. Their feedback was incorporated into the next draft and this was sent to members of the Canadian Society of Palliative Care Physicians (CSPCP) who were then surveyed for their level of agreement with the recommendations. There was a 29.3% response with over 70% agreement with all but three of the recommendations. This final document addresses planned sedation for management of intolerable and refractory symptoms. It does not address emergency sedation e.g. for an acutely agitated and delirious patient. Introduction and Background The role of continuous palliative sedation therapy (CPST) still generates controversy. From the early1990s, when CPST was first described 1,2 , until the present day reports have raised concern about its potential for misuse, or abuse as a form of covert euthanasia 3,4,5,6,7,8. Correctly practiced it is an ethically and medically acceptable form of therapy 9. The expression "terminal sedation" first appeared in the literature in the 1990's in Enck's review of two articles concerning symptom control at the end of life 2. These papers suggested that up to 52% of patients near death had symptoms so resistant to available palliative treatments that only sedation was sufficient to control them. CPST appeared in

During the years of communist rule in the countries of Central and Eastern Europe (CEE) and the Commonwealth of Independent States (CIS), there were few significant palliative care developments. Since the political changes of the 1990s, however, there has been a steady development of palliative care services in this region. In 2005, the European Association for Palliative Care Task Force for the Development of Palliative Care in Europe undertook a qualitative survey among boards of national associations to identify barriers to the development of palliative care in CEE and CIS. By July 2006, 44 of 52 (85%) European countries had responded to the survey, but we report here on the specific results from 22 of 27 (81%) countries in CEE and CIS. Data were analyzed thematically by geographic region and by the degree of development of palliative care in each country. Four significant barriers to the development of palliative care were identified: 1) financial and material resources; 2) problems relating to opioid availability; 3) lack of public awareness and government recognition of palliative care as a field of specialization; and 4) lack of palliative care education and training programs. Despite huge variations in the levels of provision across the countries of CEE and the CIS, data collected in the qualitative survey reveal that the development of palliative care in many countries continues to remain uneven, uncoordinated, and poorly integrated across wider health care systems, mainly as a result of

The purpose is to provide an update the Bone Metastases Guideline published in 2011 based on evidence complemented by expert opinion. The update will discuss new high-quality literature for the 8 key questions from the original guideline and implications for practice. Methods and materials: A systematic PubMed search from the last date included in the original Guideline yielded 414 relevant articles. Ultimately, 20 randomized controlled trials, 32 prospective nonrandomized studies, and 4 meta-analyses/pooled analyses were selected and abstracted into evidence tables. The authors synthesized the evidence and reached consensus on the included recommendations. Results: Available literature continues to support pain relief equivalency between single and multiple fraction regimens for bone metastases. High-quality data confirm single fraction radiation therapy may be delivered to spine lesions with acceptable late toxicity. One prospective, randomized trial confirms both peripheral and spine-based painful metastases can be successfully and safely palliated with retreatment for recurrence pain with adherence to published dosing constraints. Advanced radiation therapy techniques such as stereotactic body radiation therapy lack high-quality data, leading the panel to favor its use on a clinical trial or when results will be collected in a registry. The panel's conclusion remains that surgery, radionuclides, bisphosphonates, and kyphoplasty/vertebroplasty do not obviate the need for Supplementary material for this article (http://dx.doi.org/10.1016/j.prro.2016.08.001) can be found at www.practicalradonc.org. Conflicts of interest. Before initiating work on this guideline, all panelists completed disclosure statements and pertinent disclosures are published within this report. Where potential conflicts are detected, remedial measures to address them are taken and noted here. TB received research funding from Templeton Foundation and leads ongoing bone metastases study. S.Lo. participated in international oligometastases consortium partially funded by Elekta and received honoraria and travel expenses from Accuray and Varian. These disclosures were shared with the panel. The panel and guideline subcommittee chair reviewed these relationships and determined that the disclosure here is sufficient to manage potential conflicts.

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...

OBJECTIVE-Low-intensity laser therapy (LILT) has been advocated for treatment of chronic pain disorders. Although the mechanism of pain relief is uncertain, this therapy has been suggested for relief of painful symptoms of diabetic sensorimotor polyneuropathy (DSP). The objective of this study was to determine whether LILT relieves the pain of DSP.

Adenocarcinoma of the pancreas is one of the top ten leading causes of cancer deaths and in the UK approximately 8,000 people are diagnosed with the disease each year. 1,2 The incidence is similar in men and women and rises with age. Rates increase significantly in people aged 45 years and over and around three-quarters of patients diagnosed with pancreatic cancer are over the age of 65.

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 ...

Purpose To establish physiotherapy management of cancer-related fatigue (CRF), in particular, to determine physiotherapy exercise management of CRF. Methods All physiotherapist members of the UK Association of Chartered Physiotherapists in Oncology and Palliative Care (ACPOPC) received a questionnaire. Results The response rate was 65% (223/341). Therapists had a mean of 6.8 years (+/−5.6) experience in oncology and/or palliative care. Seventy-eight percent of therapists recommend and/or use exercise as part of the management of CRF; 74% teach other strategies, most commonly energy-conservation techniques (79%). Therapists recommend and/or use exercise in similar frequencies with a range of cancer types, before (32%), during (53%) and following treatment (59%) and during advanced stages of the disease (68%). The most common barrier encountered by therapists in recommending and/or using exercise was related to the lack-of-exercise guidelines for patients with CRF (71%).

Problem: Healthcare organisations are expected both to monitor inequalities in access to health services and also to act to improve access and increase equity in service provision. Design: Locally developed action research projects with an explicit objective of reducing inequalities in access. Setting: Eight different health care services in the Yorkshire and Humber region, including community based palliative care, general practice asthma care, hospital based cardiology clinics, and termination of pregnancy services. Key measures for improvement: Changes in service provision, increasing attendance rates in targeted groups. Strategies for change: Local teams identified the population concerned and appropriate interventions using both published and grey literature. Where change to service provision was achieved, local data were collected to monitor the impact of service change. Effects of change: A number of evidence based changes to service provision were proposed and implemented with variable success. Service uptake increased in some of the targeted populations. Lessons learnt: Interventions to improve access must be sensitive to local settings and need both practical and managerial support to succeed. It is particularly difficult to improve access effectively if services are already struggling to meet current demand. Key elements for successful interventions included effective local leadership, identification of an intervention which is both evidence based and locally practicable, and identification of additional resources to support increased activity. A ''toolkit'' has been developed to support the identification and implementation of appropriate changes.

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.

Background: Promoting Excellence in End-of Life Care, a national program of The Robert Wood Johnson Foundation, funded 22 demonstration projects representing a wide range of health care settings and patient populations to develop innovative models for delivering palliative care that addressed documented deficiencies in the care of patients and families facing the final stage of life. Objective: To determine the practicality (feasibility of development and operation as well as acceptance by stakeholders) of new models of care and to determine the impact of the models on access to, quality of and financing for palliative care. Design: The program cannot report scientifically rigorous outcomes, but the grant-funded projects used a variety of methods and measures to assess acceptance of new models and their impact from the perspectives of various stakeholders, including patients and their families, clinicians, administrators and payers. While it is not possible to aggregate data across projects, the data reported to the Promoting Excellence national program office were used to describe program impact with respect to the practicality of palliative care service integration into existing clinical care settings (feasibility and acceptance by stakeholders), the availability and use of palliative care services (access), quality of care (conformance to patient expectations and accepted clinical standards) and costs of care. Settings and subjects: The 22 projects provided services in urban as well as rural settings, in integrated health systems, hospitals, outpatient clinics, cancer centers, nursing homes, renal dialysis clinics, inner city public health and safety net systems and prisons. Populations served included prison inmates, military veterans, renal dialysis patients, Native Americans, Native Alaskans, and African American patients, inner-city medically underserved patients, pediatric patients, and persons with serious mental illness patients. Results: Hosting or adopting institutions sustained or expanded twenty of the 22 models, and feedback from all stakeholders was positive. Project sites developed and utilized new palliative care services and addressed quality through implementation of new standards and clinical protocols. Costs of care, where they could be assessed, were unaffected or decreased for project patients versus historical or concurrent controls. Conclusions: The 22 Promoting Excellence in End-of Life Care projects demonstrated that by individualizing patient and family assessment, effectively employing existing resources 137