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All this knowledge leads to the general perception that the outcome of COPD patients requiring mechanical ventilation is poor, thus, negatively influencing the choice to admit a patient in ICU. Moreover, a multicentre study in European ICUs showed that a chronic respiratory disease is a strong predictor of withholding and withdrawing therapies inversely, for example, for the use of cardiopulmonary resuscitation [19]. However, a great variability in the end-of-life practice was observed between countries. In a recent survey carried out in European respiratory intermediate care units, the prediction of a low probability of hospital survival or poor functional status following hospital discharge, as estimated by the attending physician, were the main reasons for withholding therapy [20]. However, physicians are not always able to correctly predict the survival of a patient. A study comparing mortality at 180 days as predicted by clinicians for patients with an exacerbation of COPD with the actual 180-day mortality found that clinicians are generally pessimistic about the survival prospects and have specific problems in identifying those with poor prognosis [21]. Table 1 illustrates the main obstacles and common beliefs that may determine ICU refusal in COPD patients. All these problems are unique features in the acute setting and highlight a need to approach a clear discussion about decision making earlier and in a stable phase. It must be considered that, in this context, perceived poor quality of life from the patient does not necessarily correlate with a clear willingness to refuse invasive mechanical ventilation in case of a severe acute respiratory failure. S TAPLETON et al. [22] showed that in COPD patients whose severity at enrolment was defined only by the need for 24-h home oxygen, the health status as measured by the St George’s Respiratory Questionnaire was not associated with end-of-life treatment preferences. This means that physicians should not assume that a poor health status is associated with a higher likelihood of refusing life-sustaining treatment. To avoid

In response to open-ended questions regarding the personal experiences the participants may have had with losing any family member to cancer recently, and if they felt responsible for the death or thought of themselves as failures, 13 (11%) replied that they had suffered such a loss. Ten of the 13 (77%) responded that they did feel responsible. Two felt guilty that the care provided to their loved one was perhaps inadequate because the diagnosis of cancer had been missed. Two felt remorse about the death in spite of having done their best. Other responses included: poor communication of treating physicians with patients and families; physicians not considering palliative care options when warranted; not being available for their loved ones; and physicians not discussing prognosis with patients and families. One respondent admitted to a sense of helplessness for no particular reason.

Therefore, recent studies have focused on the best approach and content of palliative care for patients with COPD. It is suggested to start palliative care early beside curative care [31]. Furthermore, good proactive palliative care should at least consist of: 1) a standardized inven- tory of current and future care needs and a structured organization of proactive palliative care; 2) advance care planning (ACP), which involves the patient (−family)- clinician communication about end-of-life care and the completion of advanced directives [20]. Important com- ponents of ACP are discussions about the expected course of the disease and prognosis and counseling con- cerning preferences for care at the end of life, including spiritual care [19]; 3) development and implementation of a patient-tailored proactive palliative care plan. There are several problems from the patient as well as from the clinician perspective when it comes to satisfactory implementation of ACP and a patient-tailored proactive palliative care plan [7]. First, there are clinician and patient related barriers to discuss ACP [32]. Patients for instance avoid ACP discussions out of fear of suboptimal treatment in case of emergencies while clinicians are concerned that early ACP will take away patients’ hope [20]. Discussions about ACP are therefore unlikely to occur and when they do occur they are likely to be of poor quality [19]. Second, not all clinicians have a special interest in or are qualified to perform proactive palliative care. Finally, delivering proactive palliative care beside curative care for patients with COPD may increase the workload and clinicians may be faced with shortage of time [7]. In order to overcome these prob- lems it is suggested that a multidisciplinary approach to proactive palliative care with better access to specialist palliative care services will help patients with COPD navigate through the continuum of chronic disease management and will improve quality of end-of-life care [7,10].

Although the presented data show that palliative care has improved over the years, there is still potential for further improvement. A regular monitoring of provided end-of-life care enables continuous feedback and constructive discussions for further improvements. Registrations in the SRPC can probably only increase the quality to some extent, as the results suggest. More studies are needed to investigate the possibility of quality improvement in end-of-life care with more extensive actions. It is possible that additional improvements can be achieved with the help of SRPC by combining ques- tionnaire collecting with information to and training for concerned healthcare professionals and/or prospective use end-of-life care pathways (eg, Liverpool Care Pathway for the dying patient). Other ways to collect data on patients in end-of-life care should also be reviewed, such as designing a similar questionnaire to be answered by patients in palliative care or by their next of kin. Methods to promote greater use of evaluation of registry data at the individual units are also options that should be reviewed. Regardless of which means are used to accomplish better end-of-life care, results in SRPC can be an easy and ef fi cient way to monitor improvements and identify areas that need further attention.

Palliative care is dedicated to patients with advanced life-threatening illnesses in order to improve their quality of life by addressing their psycho-social, phys- ical and spiritual needs [11]. Better palliative care for older people is an international goal [11, 12]. Com- pared to cancer patients, patients with non-malignant diseases such as heart failure still have less access to palliative care services, even though an increasing numbers of such patients are in need of palliative care [6]. Studies show that palliative care plays an im- portant role in relieving suffering and distress in pa- tients and caregivers by providing optimal symptom management as well as psychological and spiritual support [7, 13]. End stage heart failure can be appro- priately managed by using generic palliative care skills [14]. Moreover, palliative care helps in overcoming communication difficulties by addressing personal treatment goals and end of life issues such as advance directives and hospice care [7]. Previous studies fo- cussed on a broad range of ages and did not explicitly deal with the needs and experiences of the old and very old 1 [6, 15].

Background: Palliative care is the provision of end of life care to the patient with a terminal disease; its primary focus is on improving the quality of life rather than quantity of life. While palliative care emphasizes over physical body pain reduction, it also suggests psychological comfort and spiritual wellbeing. Several research studies corroborate that interventions are done to keep the patient mentally relaxed greatly affects the patient's bodily functions and reduces the sensation of pain. Case Presentation: In this case, the physical attributes were excellently managed but neglect was done in terms of mental and spiritual need that was evident through her verbalization of hopelessness and fear, that the disease condition is a severe punishment by God. In addition, the patient was less likely to socialize with people including friends and family. Therefore, this case has been investigated in light of multiple recent articles (2010-2015) and pointed out the evidenced-based practices that need to be done to provide care emphasizing holistic approach in order to enhance comfort to the terminally sick patients. Management & Results: It was observed that the health care providers were only concerned for the physical problems and they provided care focusing only physiological component whereas the psychological and spiritual determinants of health were greatly neglected as such that they were not included in the plan of care of the patient. Conclusion: Palliative care involves not just physiological, but also psychological and spiritual care. Based on the findings of the case study, caregivers must consider psychological and spiritual aspects of care in order to provide holistic as well as peaceful end of life care.

hospital that also had an attached specialist community palliative care service. Ethics approval was granted by the lead author’s university human research ethics committee and the ethics committee of a specialist palliative care unit. Participants were first approached by their treating clinician, who provided an information sheet and – if the participant agreed – contacted the university researcher. The criteria for recruitment were that the participant had to be an in-patient on the specialist palliative care ward, be cognitively able to undertake an interview (i.e. achieved a score of >23 on the Mini Mental State Examination) (Tombaugh and McIntyre 1992), not be in significant pain, and be capable of providing consent. It should also be noted that these participants mostly had, at the time of interview, high palliative care needs requiring an inpatient stay. Patients that were interviewed had been admitted to an inpatient unit that has approximately 700 admissions per year with a death rate of about 60 percent.

Palliative navigation variables available from our popula- tion-based data are limited. Further development of pallia- tive and end-of-life surveillance by navigators can be guided by recommendations for additional outcomes (Hauser, et al., 2011; Fiscella, et al., 2011; Watson, Vimy, Anderson, Champ, & DeIure, 2016). Data quality and interpretation checks are also advised, for example, for persons who died from a non-can- cer cause who were seen by a navigator for a palliative reason. Adjustments for associations between variables should also be incorporated. In the future, surveillance reporting could be used to evaluate the extent to which navigation is improving outcomes of interest (Paskett, Harrop, & Wells, 2011).

On seeing patients as ‘people’ many wrote about ‘empathy’. This concept was used to reflect on different issues: emotional state of students and doctors, approach to end of life care and an essential attribute. Indeed, being emphatic was perceived as ‘more than just feeling sorry’ and seen as an important trait of being a professional and competent clinician in dealing with dying and death. Tutors served as role-models in showing empathy or, occasionally, showed how it should not be done. There was also a practical side, with ‘empathy’ being a strategy, a plan of action, a technique, something to be learned and to adhere to. There was a consensus from these essays that holistic care and effective empathic interaction requires time. In sum, time-management and doctors’ empathy were associated with clinical competence which the students aspired to.

Public and healthcare professional suspicion of opioids will continue until there is good evidence for lack of harm, not simply lack of evidence of harm. A safety study using par- enteral opioids for pain in cancer patients has been recently published, showing no evidence for respiratory depression (Estfan et al 2007). A large safety study in COPD patients is urgently needed as, to date, no studies have been suffi ciently powered to detect rare but serious adverse effects (Currow et al 2003). In the meantime a pragmatic approach is needed. Opioids should be started at a low dose and titrated up care- fully, with appropriate monitoring (Mashford et al 2001; National Institute of Clinical Excellence 2004; Selecky et al 2005). Education of healthcare professionals would facilitate the appropriate use of morphine; for example, it would help prescribers to know that 1.25mg oral morphine four hourly is equivalent to just 75mg codeine over 24 hours (Twycross et al 1999). Clear protocols need to be developed so that patients are not denied this potentially important treatment.

In adult oncology, the benchmarking of palliative care has been facilitated by data demonstrating that end-of- life (EOL) care intensity (which is evaluable with administrative data, such as hospitalization and receipt of ICU care) is discordant with the wishes of adult patients with cancer.‍ 4, 5 Similar

The fourth category in which the palliative care consultants had a significant impact was the use of psychosocially supportive interventions. Documen- tation of families emotional needs by the nurses and physicians tended to be more frequent when there was a palliative care consultation. This does not nec- essarily mean that supportive conversations or inter- actions were absent from the care of families that did not have these consultations; we can say only that less documentation of support occurred. In addition, there were significantly more chaplain and social service consultations for families with palliative care consultations. It is possible that a family could have had their own chaplain present, leading to a poten- tial underrepresentation of the number of docu- mented chaplain visits; however, the nursing staff usually noted those visits. Even when death was not the expected outcome, all of the study patients were at some risk of dying simply on the basis of their diagnosis, yet many did not have documentation of basic support services. Interviewing the families of these infants could give further insight into whether they believed that they were or were not emotionally supported by the medical staff.

for most patients a life-long medical regimen may provide both a physical and psychological comfort in the last days and hours of life. It is difficult to make a substantial shift in the mode of care given this long history, and the short term uncertainty can only make the decision more difficult. (Indeed, there are anecdotal reports in our center of patients receiving opiates for palliative care who recovered sufficiently to leave the hospital.) Our CF ward has ample space for private rooms, and the close and caring long-term relationships most patients have with the medical and nursing staff may have allowed us to reproduce many of the important psychological and emotional aspects of hospice, thus lessening the desire to trans- fer to a more formal hospice setting.

Abstract: COPD is a leading cause of morbidity and mortality worldwide. Patients suffer from refractory breathlessness, unrecognized anxiety and depression, and decreased quality of life. Palliative care improves symptom management, patient reported health-related quality of life, cost savings, and mortality though the majority of patients with COPD die without access to palliative care. There are many barriers to providing palliative care to patients with COPD including the difficulty in prognosticating a patient’s course causing referrals to occur late in a patient’s disease. Additionally, physicians avoid conversations about advance care planning due to unique communication barriers present with patients with COPD. Lastly, many health systems are not set up to provide trained palliative care physicians to patients with chronic dis- ease including COPD. This review analyzes the above challenges, the available data regarding palliative care applied to the COPD population, and proposes an alternative approach to address the unmet needs of patients with COPD with proactive primary palliative care.

A purposive sample was constructed. To be eligible, care- givers had to meet the following criteria: 1) be 18 years of age or older; and 2) have provided support to a loved one receiv- ing in-home PELC services within the past two years. Semi- directed interviews were conducted using an interview guide based on the conceptual framework of the main study (Fillion, Veillette, Wilson, Dumont, & Lavoie, 2009; Gomes & Higginson, 2006; Stewart, Teno, Patrick, & Lynn, 1999) and addressing the following themes: 1) the knowledge and per- ceptions associated with PELC; 2) the needs of people at the end of their life and the loved ones providing home support to them; and 3) the main challenges to be met to improve in-home PELC. Each of these themes included sub-questions that made it possible to explore the in-home PELC experience in more depth. An audio recording was made of the inter- views, with the written agreement of the participants. The interviews were conducted at the participants’ homes so that they felt comfortable sharing their experience. This study was approved by the research ethics committee of an integrated health and social services centre (CISSS).

Patients receiving cardiac resynchronization therapy require discussions about care preferences for deactivation of the implantable cardioverter-defibrillator (ICD) in the event they develop end-stage disease. As part of the discussion, clinicians need to ensure that patients and families under- stand that turning off the ICD means that the device will no longer provide lifesaving intervention if a fatal heart rhythm occurs and that immediate death and pain will not be caused. 14,34

Particular difficulties may arise in settings where families or carers are involved in planning ongoing care, such as in the event of a loss of capacity or in cases where treatment options for children or young people need to be discussed. The stresses associated with life-limiting and life-threatening illness can give rise to differing opinions over treatment options that can have implications for the quality of care (e.g. misunderstanding prognosis, advice and clarity over when to administer anticipatory medicines) [33] . Managing expectations or disagreements takes time, and patients, their families and carers will need support to arrive at important decisions. Advice for recognising, acknowledging and managing divergent views and potential conflict has been suggested [33] as a useful negotiating strategy in working towards a consensus [29] .

14 professions including social work (Monroe, 1994, Seymour et al., 2002, Centeno et al., 2007, Meier et al., 2008). As professions develop they seek to differentiate themselves from other professions, arriving at their own professional identify (Leighninger, 1980, Davidson, 1990, Payne, 2006). Hospital-based social workers have worked hard to develop their role on the multiprofessional healthcare team and have a strong sense of ownership regarding their work with patients (Payne, 2009, Blacker and Deveau, 2010). Prior to the development and growth of palliative care, hospital-based ‘generalist’ social workers provided the full range of end of life services (Meier et al., 2008). Today, for hospitals which employ both ‘generalist’ and ‘specialist palliative care’ social workers, more than one social worker may be involved in providing care to the same patient. In these situations there is concern that social workers’ similar education and skill set could lead to role confusion and challenges in care delivery, although these issues have not been studied in the acute hospital setting (Gardiner et al., 2012). Whilst some discussion about the various aspects of consultation etiquette has been ongoing in the medical field over many years, and in nursing for some time as well, social work is late to the conversation (Weissman, 1997, Weissman and Von Gunten, 2012, Von Gunten and Weissman, 2013). As specialist palliative care social work continues to grow this intra- professional tension needs to be better understood.

The organization of palliative care was also mentioned as an aspect for improvement. During hospitalization, pulmonologists indicated that they wanted to be involved in the organization of palliative care for patients with COPD while there was also room for input of an SPCT. Since palliative care in COPD is not a common practice, we recommend that pulmonologists improve their skills of palliative care and the members of the SPCT be better informed about the management of COPD. In the ambulatory setting, most pulmonologists preferred a multidisciplinary cooperation between pulmonologist, GP, and respiratory nurse specialist. Since pulmonologists indicated ACP con- versations, communication between pulmonologist and GP, and defining the coordinating role as improvement aspects, we recommend emphasizing these aspects in training.

narrative synthesis approach supports and was designed to manage heterogeneous studies, the heterogeneous nature of the studies adds an element of difficulty to synthesizing the information well. The potential for bias through over representing one study versus another, whilst carefully scrutinised, also remains a possibility. The variety in the key terms and working definitions in the literature used to refer to specialist palliative care teams made searching for articles and having a discussion about the role and scope of the services they provide challenging. Responses from the different generalist palliative care professionals were often combined or not specifically identified in the studies. Physicians, nurses, social workers, etc. might have dissimilar perceptions of the various themes. These nuances are lost when results are pooled which limits the results of this review. Further distinction between trust and expertise is also needed. The use of studies with quantitative methods exploring participants’ perceptions could be potentially limiting too, as a quantitative approach is not the best approach to answer such nuanced questions. Even with these concerns the quantitative studies are informative and useful for the purposes of this review. Whilst a qualitative method may be more suited to answering questions of perception, the qualitative studies included in the review also have limitations. From a participant standpoint, the studies were often limited to a single institution where it would not be possible to reach data saturation before all relative participants have been included. Given the practicalities involved in qualitative research and the confines of a single institution, it appears that the qualitative studies were able to adequately address the research question and their results are informative for clinical practice.