Cuidado Paliativo é cuidado ativo total de pacientes cuja doença não é mais passível de responder a tratamento curativo. Almeja-se controlar a dor e outros sintomas e tratar de problemas de ordem psicológica, social e espiritual. O objetivo é melhorar a qualidade de vida do paciente e de seus familiares, de acordo com a definição da Organização Mundial de Saúde. Esta abordagem, portanto, é de responsabilidade de uma equipe multidisciplinar que enfoca a pessoa doente e o alívio integral do sofrimento. A vida é afirmada, e a morte é encarada como natural, não sendo antecipada nem postergada. Dada a importância desta difícil tarefa, é crucial que o atendimento seja de boa qualidade, e para tanto é necessário utilizar indicadores de qualidade do Cuidado Paliativo. No caso do câncer incurável, os indicadores de qualidade do Cuidado Paliativo incluem a avaliação da qualidade de vida, do controle dos sintomas e da satisfação do paciente e da família com o cuidado. Além desses indicadores, fundamentais, porém de difícil obtenção, existem aqueles obtidos com base em dados administrativos. Dentre estes, os mais frequentes são a fração de pacientes encaminhados ao Cuidado Paliativo, a porcentagem de pacientes que receberam quimioterapia no final da vida e fração de óbitos ocorridos na unidade de cuidados paliativos ou no domicílio. Numa situação ideal, espera-se que a grande maioria dos pacientes seja encaminhada à unidade de cuidados paliativos e que o óbito ocorra na própria unidade ou na residência do paciente, e não em unidades de emergência, na terapia intensiva ou em enfermarias gerais. Quanto à quimioterapia no final da vida, pode ser um indicador de tratamento inapropriadamente agressivo. Cabe ressaltar, contudo, que estes indicadores não estão universalmente validados. Levando-se em consideração esta limitação, estudos em outros países concluem que o Cuidado Paliativo é subutilizado e introduzido tardiamente no curso da doença. Este cenário negativo inclui o uso agressivo da quimioterapia no final da vida. Um diagnóstico de câncer de pulmão metastático geralmente implica em um curto tempo de vida com uma carga elevada de sintomas. Nesta situação, a quimioterapia parece ser vantajosa, prolongando a vida e melhorando a sua qualidade, quando se avalia esse grupo de pacientes de uma forma global. Em um paciente individual, porém, há de ser levar em conta seu estado funcional, bem como as comorbidades e a toxicidade do tratamento. Também são importantes aspectos da comunicação médico-paciente quanto ao prognóstico e os benefícios esperados da quimioterapia. Neste contexto, a necessidade da visão global do paciente e do controle de sintomas implica no Cuidado Paliativo, isoladamente ou associado ao tratamento oncológico específico. Resolvemos, portanto investigar, retrospectivamente, indicadores de qualidade, com base em dados administrativos, do Cuidado Paliativo em pacientes portadores de câncer de pulmão não pequenas células (CPNPC) metastático atendidos na Fundação Pio XII, Hospital de Câncer de Barretos, cujo óbito tenha ocorrido entre Janeiro de 2003 e Janeiro de 2005. Os indicadores escolhidos foram a porcentagem de pacientes encaminhados à unidade de Cuidados Paliativos, o local do óbito e a porcentagem de pacientes que receberam quimioterapia no último mês de vida.No total foram revisados 275 prontuários, destes 36 estavam incompletos, sendo elegíveis 239 pacientes para as análises. A data do óbito foi detectada em 218 pacientes, sendo o atestado de óbito disponível em 166 pacientes. A maioria dos pacientes (75,3%) tinha baixa escolaridade, analfabetos ou com o ensino fundamental incompleto. A cor era branca em 78,6% dos casos e a idade mediana era de 64 anos (intervalo 31-90 anos). O hábito do tabagismo foi detectado em 77,4% dos pacientes. Quanto às características clínicas, notamos que o escore de estado funcional Karnofsky (KPS) não foi registrado em aproximadamente metade dos pacientes. Naqueles em que havia registro, 58,8% apresentavam estado funcional preservado (KPS >70%). Os sítios de metástase mais frequentes foram o fígado (39,3%), ossos (22,6%) e cérebro (19,7%). Em relação aos sintomas, os mais frequentes foram dor (47,6%) e dispnéia (34,3%), sendo os opiódes usados por 36,8% dos pacientes. O tratamento oncológico consistiu em cirurgias (6,5%), radioterapia (61,9%) e quimioterapia (44,7%). Os esquemas mais utilizados (85,9%) em primeira linha foram as combinações baseadas em platina, com uma mediana de três ciclos administrados por paciente. A quimioterapia de segunda linha foi aplicada em 9,0% dos pacientes.Quanto aos indicadores de qualidade do Cuidado Paliativo, somente 104/239 (43,5%) dos pacientes foram encaminhados à unidade de cuidados paliativos. Nestes o óbito ocorreu em 38 ± 58 (media ± desvio padrão) dias, sendo uma fração importante destes, 20/104 (19,2%), em menos de quatro dias. Num modelo por análise de regressão logística, o sexo feminino, a menor escolaridade, a realização de radioterapia, a ausência de dor, e a ausência do uso de quimioterapia foram preditivos do encaminhamento à unidade (p=0,04; 0,03; 0,01; 0,03; 0,05), respectivamente. A quimioterapia foi aplicada em 46 dos 239 pacientes (19,2%) no último mês de vida, sendo a ausência de realização de radioterapia (p= 0,02) o único fator preditivo, pela análise de regressão logística. Em relação ao local do óbito, este ocorreu no domicílio ou na unidade de cuidados paliativos em somente 119/218 (55,5%) dos casos, sendo os restantes em enfermarias clínicas, na emergência ou em unidades de terapia intensiva. A sobrevida global foi de 4,4 ± 0,3 (media ± desvio padrão) meses após o diagnóstico da metástase, pela análise de Kaplan-Meier.Em conclusão, este grupo de pacientes portadores de CPNPC metastático não se beneficiou plenamente do Cuidado Paliativo e uma fração significativa destes foi submetida a tratamento agressivo no final da vida. A dificuldade em estimar-se o prognóstico e fatores culturais ligados a negação da finitude humana e exaltação da tecnologia, além de barreiras na comunicação médico-paciente precisam ser melhor estudados / Palliative Care is the total active care of patients whose disease is no longer amenable to curative measures. Control of pain and other symptoms is a priority, and psychological, social and spiritual issues are taken into consideration. The goal is to improve the quality of life of patients and of their families, according to the World Health Organization definition. Thus a team approach is necessary, with focus on the individual as a whole and aiming to ease suffering. Life is affirmed and death is seen as natural and neither hastened nor postponed. Given the importance of this hard task, quality of care should be optimal. In relation to incurable cancer, Palliative Care quality measures include the evaluation of the quality of life, of symptom control and of patient´s and family satisfaction with care. In addition to these measures, which are fundamental but difficult to obtain, there are those obtained from administrative data. Among these, the most frequent are the percentage of patients who were referred to the palliative care unit, the percentage of patients who were treated with chemotherapy near the end of life and the fraction of patients who died in their homes or in the palliative care unit. In an ideal setting, the great majority of these patients should be referred to Palliative Care, the place of death should be the Palliative Care unit or the patients´ homes. Death should not occur in emergency rooms, intensive care units or acute care inpatient units. Regarding chemotherapy administration near the end of life, that may imply in an inappropriately aggressive treatment. However, these quality measures lack universal validation. With this caveat in mind, studies conducted in other countries concluded that Palliative Care is underutilized and introduced late in the disease course. This negative scenario includes the aggressive use of chemotherapy near the end of life.A diagnosis of metastatic lung cancer usually implies in a short survival and a heavy symptom burden. Chemotherapy may prolong survival and improve the quality of life, when this population is analyzed as a whole. In the individual patient, however, performance status, comorbidities and treatment toxicity must be taken into consideration. Patient-doctor communication issues that deal with prognosis and the expected benefits of chemotherapy are also critical. In this context, to see the patient as a whole and symptom control demands Palliative Care, alone or in addition to specific anti-cancer treatment.Thus, we decided to retrospectively investigate administrative based quality measures of Palliative Care in metastatic non small cell lung cancer patients (NSCLC), who were managed at Fundação Pio XII, Hospital de Câncer de Barretos, and who died from January 2003 to January 2005. The measures that were chosen were the percentage of patients who were referred to the palliative care unit, the place of death and the percentage of patients who were treated with chemotherapy in the last month of life. A total of 275 patient charts were reviewed, 36 were incomplete, thus 239 patients were eligible for the analysis of clinical and treatment characteristics. The time of death was available for 218 patients, and the death certificate was available for 166 patients. Most (75,3%) patients had a low educational level, being illiterate or with incomplete elementary school. Patients were white (78,6%) with median age of 64 years (range 31-90 years). Smoking history was positive in 77,4% patients. In relation to the clinical characteristics, Karnofsky (KPS) performance status score was not recorded in approximately half of the patient group. In those that it was available, 58,8% presented with preserved functional status do (KPS>70). The most frequent metastatic sites were liver (39,3%), bones (22,6%) and brain (19,7%). The most frequent symptoms were pain (47,6%) and shortness of breath (34,3%); opioids were used by 36,8% dos patients. Cancer treatment was surgery (6,5%), radiotherapy (61,9%) and chemotherapy (44,7%). The most commonly used protocols in first line (85,9%) were platinun based combination chemotherapy, with a median of three cycles per patient. Second line chemotherapy was administered to 9,0% of patients.In relation to the Palliative Care quality measures, only 104/239 (43,5%) patients were referred to the unit, 38±58 days before death, being a significant minority, 20/104 (19,2%) referred late, four or less days before death. In a logistic regression model, female gender, low educational level, radiotherapy, lack of pain and lack of chemotherapy administration were predictive of referral to the unit (p=0,04; 0,03; 0,01; 0,03; 0,05), respectively. Chemotherapy was administered to a significant minority 46/239 (19,2%) of patients in the last month of life. In this case, the lack of radiotherapy was the only predictive variable by logistic regression analysis (p= 0,02). The place of death was in the patients´ homes or in the Palliative Care unit in only 119/218 (55,5%) cases, being the rest in acute care beds, emergency rooms or intensive care units. The overall survival after the diagnosis of metastatic disease was 4,4 ± 0,3 months, by Kaplan-Meier analysis.In conclusion, our NSCLC patients did not fully benefit from Palliative Care and a significant fraction of these patients were submitted to aggressive care near the end of their lives. The difficulty in estimating patients´ prognosis and cultural factors linked to the denial of human finitude and technicism, as well as patient- doctor communication barriers should be explored in future studies

BACKGROUND: Nurses working in intensive care units (ICUs) frequently care for patients and their families at the end-of-life (EOL). Providing high quality EOL care is important for both patients and families, yet ICU nurses face many obstacles that hinder EOL care. Researchers have identified various ICU nurse-perceived obstacles, but no studies have been found addressing the progress that has been made over the last 17 years.OBJECTIVE: To determine the most common and current obstacles in EOL care as perceived by ICU nurses and then to evaluate whether or not meaningful changes have occurred since data were first gathered in 1998.METHODS: A quantitative-qualitative mixed methods design was used. A random, geographically dispersed sample of 2,000 members of the American Association of Critical-Care Nurses was surveyed.RESULTS: Five obstacle items increased in mean score and rank as compared to 1999 data including: (1) family not understanding what the phrase "life-saving measures" really means; (2) providing life-saving measures at families' requests despite patient's advance directive listing no such care; (3) family not accepting patient's poor prognosis; (4) family members fighting about use of life support; and, (5) not enough time to provide EOL care because the nurse is consumed with life-saving measures attempting to save the patient's life. Five obstacle items decreased in mean score and rank compared to 1999 data including (1) physicians differing in opinion about care of the patient; (2) family and friends who continually call the nurse rather than calling the designated family member; (3) physicians who are evasive and avoid families; (4) nurses having to deal with angry families; and, (5) nurses not knowing their patient's wishes regarding continuing with tests and treatments.CONCLUSIONS: Obstacles in EOL care, as perceived by critical care nurses, still exist. Family-related obstacles have increased over time and may not be easily overcome as each family, dealing with a dying family member in an ICU, likely has never experienced a similar situation. Based on the current top five obstacles, recommendations for possible areas of focus may include (1) improved nursing assessment regarding the health literacy of families followed with directed, appropriate, and specific EOL information, (2) improved care coordination between physicians and other health care providers to facilitate sharing care plans, (3) advanced directives that are followed as written by patients, (4) designated family contact communicating with family and friends regarding patient information, and, finally, (5) earlier, transparent discussions of patient prognoses as disease processes advance and patient conditions deteriorate.

Background: Around 100 000 people die in Sweden every day and most of them need palliative care. Palliative care means relieving relief and promoting good quality of life for dying persons. Palliative care is included in the education programme for nurses, although it varies during the education. The aim:To describe nurses experience of care in palliative care with focus on the end of life care. Method:A literature study based on eleven scientific articles. Main Result:Showed that care for dying patients are sensitive and emotional for nurses and this can affect palliative care. The experiences showed that nurses felt unprepared to meet dying patients, this was linked to deficiencies such as knowledge, time, experience and support. The result showed that communication and close relationships are basis for good palliative care and also the promotion of good quality of life for dying patients at the end of their lives. Conclusion: Palliative care is complex. In order for nurses to be able to offer good palliative care for the dying patients, better educations and strategies are needed to deal with difficult situations and build a stronger relationship with the patients and their relatives. Furthermore, lack of time and knowledge affects the care and nursing profession. Developing the experiences as well as constant reflection on nurse's work role can help to understand the care of dying patients better. / Bakgrund: Varje år avlider cirka 100 000 människor i Sverige. De flesta behöver palliativ vård. Palliativ vård innebär att lindra lidandet och främja god livskvalitet för döende personer. Palliativ vård ingår i utbildningen för sjuksköterskor, men innehållet varierar under utbildningens gång. Syfte: Att beskriva sjuksköterskors upplevelse av vårdandet inom palliativ vård med fokus på livets slutskede. Metod: En litteraturstudie baserad på elva vetenskapliga artiklar. Huvudresultat: Visade att vårda döende patienter är känslomässigt för sjuksköterskor och detta kan påverka den palliativa vården. Upplevelserna visade att sjuksköterskor kände sig oförberedda att möta döende patienter, detta förknippades till brister såsom kunskap, tid, erfarenheter samt stöd. Resultatet visade att kommunikation och nära relation är förutsättningar för en god palliativ vård och främjar god livskvalitet för döende patienter i livets slutskede. Slutsats: Palliativ vård är komplex. För att sjuksköterskor ska kunna erbjuda en god palliativ vård till döende patienter behöver de mer utbildning och strategier för att hantera svåra situationer samt skapa en bättre relation med patienterna och anhöriga. Brist på tid och kunskap påverkar vård och sjuksköterskors profession. Utveckling av upplevelserna samt ständig reflektion över sjuksköterskornas arbetsroll kan vara till hjälp för en bättre förståelse av att vårda döende patienter.

Heart failure (HF) is one of the top causes of mortality in the United States and globally. In order to combat the high mortality rates of this disease, medical technology, including internal cardioverter defibrillators (ICD) and left ventricular assist devices (LVAD), have become one of the most common treatments. Over the past 10 years the utilization of these cardiac devices has increased exponentially, which has created a new phenomenon of how we discuss death with patients who have one of these devices. The purpose of this dissertation is to increase understanding of the end-of-life decision making processes and current experiences that patients with a cardiac device are having. This dissertation includes four original manuscripts that focus on patients with a cardiac device and their experiences with decision-making at the end-of-life. The first paper is a data-based paper that examines experiences of patients with an ICD and what factors are associated with having a conversation with their providers about end-of-life. The second paper is an integrative review of the literature regarding what is currently known about end-of-life with an LVAD. The third paper is a psychometric evaluation of the Control Attitudes Scale-Revised (CAS-R) for patients with an LVAD. The fourth paper is a data-based manuscript that looks at patients with an LVAD and their attitudes and experiences with end-of-life conversations with providers and next-of-kin and the impact of cognition on these attitudes and experiences. The findings of this dissertation will hopefully inform providers of patients with cardiac devices about their patients end-of-life decision making processes. It will also demonstrate the gaps that are currently in practice, and ideally be able expand on how to assist patients and providers on improving communication about end-of-life decision making.

Majority of the products get discarded at end-of-life (EoL), causing environmental pollution, and resulting in a complete loss of all materials and embodied energy. Adopting a closed-loop material flow approach can aid preventing such losses and enable EoL value recovery from these products. Design and engineering decisions made and how products are used impact the capability to implement EOL strategies such as disassembly and remanufacturing. Some underlying factors affecting the capability to implement these EOL strategies have been discussed in previous studies. However, relevant metrics and attributes are not well defined and comprehensive methods to quantitatively evaluate them are lacking. This study will first identify key lifecycle oriented metrics affecting disassemblability and remanufacturability. Then a methodology is proposed for the quantitative evaluation of these strategies considering the quality of returns, product-design characteristics and process technology requirements. Finally, an industrial case-study is presented to demonstrate the application of the proposed method.

This qualitative and quantitative study focused on exploring hospice patient’s perceptions of family support. Family support was conceptualized as which family member they expect to receive support from, types of support provided, frequency of support, family communication about medical illness, and type of support that is perceived to be most helpful. Fifteen partcipants between the ages of 70 to 98 were interviewed using purposive sampling. Findings showed that although participants found both physical and emotional support helpful, more than half reported perceiving emotional support as the most helpful. Recommendations for social work practice and research were discussed.

Effective June 9, 2016, many terminally ill patients residing in the State of California will now have the legal option of terminating their life because of protections offered under The California End of Life Options Act. Social workers whose population of care includes terminally ill patients will likely be engaging in conversations about end of life options, including physician assisted death, with their patients. Little research exists addressing what factors may influence social workers perceived preparedness to discuss physician assisted death with patients, yet the expectation that social workers be prepared to discuss all available end of life options with patients is present. The purpose of this quantitative study is to explore the influence of demographic characteristics and experience with terminal illness on California social workers perceived preparedness to discuss physician assisted death as an end of life option with terminally ill patients. Convenience sampling was utilized which included sixty-two Master of Social Work level or higher social workers who are employed in medical social work positions and are providing direct care for chronically and terminally ill patients. Participants completed a voluntary paper survey that gathered demographic information, experience with terminal illness and perceived preparedness to discuss physician assisted death with patients through Likert Scale measures. The findings showed a positive relationship between California social workers who perceived themselves as prepared to discuss physician assisted death and the identification of their social work education as a source of their preparedness.

HIV-positive children in sub-Saharan Africa have numerous challenges to overcome. These challenges increase psychosocial stress as well as symptom burden including fatigue, weight loss, pain, and mental changes. The symptoms may persist even after initiation of antiretroviral therapy, so such children need additional care. Palliative care lays emphasis on holistic patient-centered care, including physical, psychological, social, and spiritual symptoms, alongside antiretroviral therapy. There is limited data on the impact of integrating palliative care with standard HIV care and treatment in children. The purpose of this study was to fill the gap in the literature by investigating the impact of palliative care on health status in HIV-positive children on antiretroviral therapy. The theoretical framework was based on the humanistic nursing theory. Using the Mann Whitney U and logistic regression tests, the health-related quality of life of 97 children who received palliative care in addition to standard HIV care was compared to 180 HIV-positive children who received standard HIV care only through chart reviews. According to study results, children receiving palliative care alongside antiretroviral therapy have better physical and psychosocial health compared to children receiving only antiretroviral therapy. Increasing age was a contributing factor to better psychosocial and physical health in patients receiving palliative care. Emotional, social, and school functioning are important factors that determine treatment outcomes in children on antiretroviral therapy, and addressing those factors through palliative care will create a positive social change by improving treatment outcomes, quality of life, and longevity.

The hospice care population with cancer are often older adults who report many cancer-related symptoms experienced often in clusters. Most prevalent of these symptoms is fatigue and often it co-occurs with depressive symptoms and poor physical functioning. This dissertation examined fatigue, symptom clusters, depression, physical activity, and functional status in older adults with cancer. The aims of the literature review were to understand the relationship among physical functioning, cancer fatigue, fatigue-related symptom clusters, and their relationship with functional status In older adults. The literature related to these associations is insufficient and inconclusive. The methods section aimed to investigate the reliability and validity of the Center for Epidemiology Studies-Depression scale, Boston Short Form (CESD-10). Using Structural Equation Modeling (SEM) for confirmatory factor analysis, the factor structure of responses in a cross-sectional sample (N = 200) of adults with different types and stages of cancer was examined. Internal consistency reliability estimate Cronbach’s alpha =0.737. The CESD-10 four-factor model (positive affect, depressive affect, somatic complaints, and interpersonal challenges) fits the data well. The CESD-10 was a valid and reliable measure for assessing depressive symptoms in this study. The final section examined fatigue related symptom clusters and their relationships with functional status in older adult hospice patients with cancer (N=519). The fatigue-related symptom cluster (lack of energy, feeling drowsy and lack of appetite), significantly predicted poor functional status. Experiencing physical and psychological symptoms has a significant impact on functional dependence. Hospice healthcare professionals should be alert to older adults’ symptom cluster experience during assessment and management.

<p>When someone becomes seriously ill from cancer their relatives experience a great suffering from observing the changes in their loved ones as a result of the disease. They felt that they did not receive the support and information they needed to process their difficult lives.It also emerged that the relatives didn’t think the nursing staff treated and saw the family as a whole. The purpose of the study was to describe the suffering of families, as they experienced that during the final stages of a cancer patient's life. An inductive, manifest, content analysis has been carried out in five autobiographies written by relatives of patients, who had died as a result of cancer. Biographies were reviewed by the Graneheim and Lundman's method of analysis. We used Katie Eriksson’s scientific theories of care regarding suffering as a theoretical framework. The result has collected material presented in three categories: fear, sadness, and frustration which mirrors the suffering of relatives in these books. The results showed that the relatives denied the disease's existence, experienced a fear of the disease symptoms, death, and a future without the patient. The relatives describe the grief that they felt about the prospect of being left alone, about the patient's deterioration, and of not being seen as individuals. Finally the relatives describe the frustration they feel over the panic, stress, fatigue and anger that they experience in the end of the patients life.</p> / <p>När någon blir svårt sjuk i cancer upplever dess anhöriga ett stort lidande över att se sin närmaste förändras till följd av sjukdomen. De upplevde att de inte fick det stöd och den information som de behövde för att hantera sin svåra livssituation. Det framkom också att anhöriga inte tyckte vårdpersonalen såg och vårdade familjen som en helhet. Syftet med examensarbetet var därför att beskriva anhörigas lidande så som de upplever det under den sista tiden av den cancersjuka patientens liv. En induktiv manifest innehållsanalys har genomförts på fem självbiografier skrivna av anhöriga till patienter som avlider till följd av cancer. Biografierna granskades med Graneheim och Lundmans analysmetod. Som teoretisk referensram används Erikssons vårdvetenskapliga teorier om lidande. I resultatet har insamlat material redovisats i tre kategorier; rädsla, sorg och frustration som speglar de anhörigas lidande i böckerna. Resultatet visar att de anhöriga förnekar sjukdomens existens och upplever en rädsla över sjukdomens symtom, döden och en framtid utan patienten. De anhöriga beskriver den sorg de upplever över att bli lämnade ensamma, över patientens försämring och över att inte bli sedda som individer. Slutligen beskriver anhöriga en frustration över den förtvivlan, panik, stress, trötthet och vrede som de upplever under sista tiden patienten finns i livet.</p>